The Importance of Advocacy

When it comes to parenting a child with autism, advocating for their rights is more than just a responsibility – it is an obligation you have as the parent of that child.  Learning how to do it well and be confident in your abilities is vital.  Sure, you will make mistakes, but the benefits of pushing through this overwhelming new assignment can truly help your child reach their potential. You are the right person for this job!  

In this guide, we will explore the fundamental aspects of parental advocacy and highlight exactly how a committed effort can positively impact your child’s access to resources and support in a variety of environments and situations.  We’ll also discuss some practical strategies for navigating various aspects of your child’s journey, and offer some helpful tips for you and your child along the way.

Advocates Need Care Too

Before we dive into some specific methods on how to advocate for your child, it’s crucial we emphasize the importance of caring for yourself. In order to be your child’s best advocate, you need to be the best version of yourself. This means being mindful of your own limitations and recognizing when it’s time to ask for help, take a break, rest and regroup. Remember, effective advocacy doesn’t mean you need to be an autism researcher or expert; you can rely on others within the community for valuable insights and support. Ensuring you take breaks when needed will help you sustain your advocacy efforts over the long term.

Understanding Autism

The most crucial thing to remember when advocating for your child is whom you are advocating for. As a parent, you have the power to possess and obtain invaluable knowledge and experience, but it is vital to remember that as their advocate, you are working with your child, not for them. In order to successfully work alongside your child you must understand the challenges they face each day.  

Children with autism are often misunderstood.  They learn, socialize, and often even communicate differently than others; helping those around you understand this is step 1.  Be bold and open in sharing your child’s diagnosis and help family, friends, and anyone caring for your child understand your child’s needs, wants, unique abilities and areas where they struggle.  Being honest and helping others understand your child will always pay off.

The next step in advocating for your child is listening to them. It is nearly impossible for somebody who is not on the spectrum to fully understand how individuals with autism see and perceive the world, but by listening to their experiences and creating safe spaces we can gain a better understanding of their perspective and more effectively support them.  As your child’s advocate, part of your role will be to help those around you develop these same listening skills.

Lastly, and most importantly, educate yourself. Having a child on the autism spectrum means you may not always understand exactly what your child is experiencing, but by educating yourself, you can be in the best position to advocate for their needs and wants. Numerous resources are available online, such as Autism Speaks, which provides valuable insights into Autism Spectrum Disorder. Additionally, organizations like AANE (Association for Autism and Neurodiversity) offer information, forums, and community support. These resources connect you with other families and individuals who can share their experiences and provide guidance on navigating life as a parent of a child with ASD.

Types of Advocacy

• Educational Advocacy

Understanding the unique educational needs of children on the autism spectrum can be challenging. They wonder:

• How do I find accessible and high quality programming near me?
• Can I afford this?
• How do I know which program is right for my child?
• Will my child’s diagnosis hold them back from getting the education they need to function and thrive in life?

In finding answers, it’s crucial for parents to actively seek out information from reputable sources including online communities, experts, and other families affected by autism. By building connections, parents can learn from others’ experiences and avoid mistakes others have made, ensuring their child receives the care and support they need. It is important to remember you are not alone in this journey, and by staying connected and informed you can provide the best education and support your child needs to thrive, grow, and learn.

• Healthcare Advocacy

When parents develop concerns about their child’s development one of the first places they turn to is their pediatrician. With a constantly growing variety of options available in this sector, it is more important than ever to do thorough research to find the best doctor for your child. This person should also be able to help guide you to identify other healthcare specialists. Parents of children with ASD have expressed the need for an assertive approach when advocating for their child’s health care needs. Early diagnosis is key to Early Intervention Care (one of the most effective strategies for supporting children with autism spectrum disorder).

• Community Advocacy

When it comes to supporting a child with autism, parents have made it clear that continuing to develop a community in the world of autism is exceedingly important. Advocating for community in this space is not about speaking for people with autism, but about sharing information and experiences to help others in similar situations.

Wrap-Up

In order to be the most effective advocate for a child with autism, it is important to first learn how to collaborate with them rather than working for them. This approach can help parents better listen to their child and their needs, enhancing the effectiveness and acceptance of their efforts. By better understanding the parental advocacy role and fostering collaboration, parents can ensure that their child receives essential educational services, access optimal healthcare options, and that they positively contribute to the autism community.

Lastly, it is important to remember you are not alone! Here at Ally Behavior, we extend our support beyond the walls of our ABA Centers to our online presence, where we work to provide content with meaningful tips and informative blogs like this one to reach as many families as possible. Remember that together, we can make a difference in the lives of children with autism.