Advocacy is a way that you, as a parent of a child with autism, can support and assist your child. An advocate is a dedicated individual committed to effecting change, actively engaging with others to drive transformative progress, and diligently immersing themselves in understanding the intricacies of the issues central to their mission for change. As a parent, you likely want to help your child to achieve their potential and accomplish goals that will support their quality of life. To do this, you probably talk to your child’s teacher, talk to their doctor, talk to their therapist, and other important people in the child’s life. Your goal in some of these relationships may be to create change, such as helping your child have better access to services or to make sure that your child’s services are effective for them. You can be your child’s advocate.
Being an Autism Advocate at Home
As difficult as it may be, you can be an advocate for your child at home. You can advocate for your child within your own family. Many people don’t fully understand autism spectrum disorder. This is part of the way in which you can be an advocate for your child. You can help family members better understand autism and how ASD affects your child. You can help to counteract myths about autism by sharing facts and accurate information. You can help your family members - both immediate family members and extended family members - to understand your child’s sensory issues, behavioral issues, communication and social skills or deficits in these areas, and what makes them unique. You can help them to be more accepting of your child for who your child is as a unique individual.
On the other hand, if a family member isn’t accepting of your child, you may need to distance your child from that family member. Of course, how and if you do this is completely up to you and only you know what is best for your child and your family. Using your advocacy skills within your own family is a great way to support your child with autism.
Modeling Advocacy Skills
Advocating for your child is also teaching your child healthy assertive skills. When you stand up for your child and work towards creating positive change for your child’s benefit, you are modeling the ability of getting one’s needs met and how to reach out for help and support. Your child sees you doing this, and they can learn to advocate for themselves with your guidance. Children often learn from observing their parents, and advocacy skills are no exception. If you advocate for your child, they will likely notice. You are setting a great example for your child on how to ask for what you need.
Helping the Autism Community
Also, as an autism advocate, even when you are focused on helping your own child, you are also paving the way for other children with autism spectrum disorder. By advocating for your child at school, for example, you are creating change in the school system that may possibly benefit other children with autism, as well. For example, you might speak with a special education specialist, and you may advocate for certain accommodations to be put in place for your child in the classroom. By asking for these accommodations, you are adding to the supportive culture of your child’s school.
To illustrate this point further, consider a scenario where advocating for your child includes requesting breaks during class or ensuring access to sensory regulation toys like fidget toys and headphones. By doing so, you contribute to fostering a nurturing environment that embraces and supports children with autism.
Autism Advocacy in Schools
When you advocate for your child in the school system, always try to have written documentation. This is typically done through an IEP or an Individualized Education Plan. An IEP is a written document that the public education system uses to identify the specific needs of the student. It also helps track their progress. The IEP sets realistic goals and identifies the supports and accommodations that the child will receive to help them achieve those goals. You can be your child’s advocate by attending and participating in IEP meetings. It is important to keep an open mind but also to be assertive in what you believe your child needs.
IEP Meetings and Autism Advocacy
The most successful IEPs are typically ones that involve healthy collaboration between the school staff and the parent. They both have unique perspectives and expertise when it comes to understanding the student, and they can collaboratively contribute their insights to formulate the most effective plan for the child. When you are in an IEP meeting, you can review the current IEP and address any accommodations that are in place. You can inquire about how these accommodations help your child be successful in school.
The definition of success will be different for every child, so it is crucial to reflect on what matters most to both you and your child. A key consideration is whether the accommodations are effectively enabling your child to consistently attend school for the entire day. For instance, if your child frequently calls home due to anxiety or sensory overload, are the accommodations effectively addressing these challenges? Always ask questions, focus on your child’s goals and what will be most beneficial for them, and propose potential accommodations that could help your child in the areas in which they need support.
Supporting Your Child as an Autism Advocate
If you are a parent of a child with autism, there are many ways that you can be an advocate for your child. You can advocate within your own family. You can advocate at your child’s school. You can even advocate in the community or at social events. Being an autism advocate is a way to support your child. It helps others better understand autism and your child as an individual. It supports the larger autism community, as well.