Autism advocacy is about supporting the rights and interests of a person on the spectrum. While professional advocates do exist, many are volunteers looking to help families overcome the many challenges those with ASD face. They work tirelessly to ensure that their rights and needs are met. However, not every family has access to an experienced advocate. If you’re looking to advocate for your child with ASD, here are some simple ways to start.
Advocating at Home
It’s true what they say: advocacy begins at home. When a family first finds out about a child’s diagnosis, the reaction can be mixed. They may express disapproval, criticism, or disbelief. Some may even believe in harmful stereotypes about people with ASD. As an advocate, sharing your story can help combat biases and stereotypes. Additionally, you can provide your family with factual information about ASD - we’ve outlined some of our favorite resources on our website.
Encourage reasonable expectations about your child’s development. Remind them that every child is unique and learns at their own pace. Remember to take care of yourself and your child - don’t be afraid to enforce boundaries if necessary!
Advocating at School
The best way to advocate for your child at school is to be informed! Before the start of the school year, observe them at home and bring a list of any difficulties your child may be having. This might include difficulty socializing, challenges transitioning from one task to another, or trouble with fine motor skills. As the school year progresses, keep track of improvements and areas of concern. When meeting with teachers or addressing your child’s IEP (also called an Individualized Education Plan), bring these lists with you. These insights will help faculty members better understand your concerns and address any issues with your child’s education plan.
When meeting with faculty and staff, take notes on your child’s IEP and ask for clarification if necessary. Make sure that the IEP is based on standardized assessments such as the Vineland Adaptive Behavior Scale or the Brigance Inventory of Early Development. When solutions, changes, or supports are suggested in a school meeting, ask for deadlines. Have the teachers outline when those changes will be implemented, how such interventions will be assessed, and how you will be kept informed of any progress.
Finally, take a third party to school meetings. This could be a friend, a family member, or even a paid advocate. This person should take notes during the meeting and offer you support if necessary.
Advocating in Your Community
Making changes at the local or state level can be overwhelming - and many caregivers aren’t sure where to start. Thankfully, getting involved with politics in your state is easy. Attending rallies, making presentations, and sharing information can enact change within your community.
Here are other ways to advocate in your community:
• Find out when the Board/Committee meets to discuss a topic or bill of interest to you
• Attend a town hall meeting
• Listen, take notes, identify who speaks on what issues
• Network with local leaders
• Share factual information on ASD with your neighborhood
If you can’t advocate in person, write to your legislators or call officials. Making connections and expressing your concerns to politicians can lead to lasting change for millions of children!