What is Parental Advocacy? What Does It Look Like?

Parental advocacy is a topic that can sometimes seem simple on the surface, but in practice puts parents in a real pressure cooker environment. Parents advocating for their children is nothing new and is certainly not limited to parents of autistic children. But parents of autistic children face unique challenges attempting to navigate a system that by its legal nature asks for parental input and the input of a variety of other stakeholders.

In best case scenarios, advocacy is a simple part of a collaborative process between all of these stakeholders to create a plan for a future that reflects your child’s wants, needs, and ambitions to the best of everyone’s ability. In worst case scenarios, parents may find themselves fighting to be heard as the professionals in the room make decisions that technically include the parent but are in practice more or less unilateral.

On top of this, many parents of autistic children are acutely aware of the stereotype of the “warrior parent” who barges in and makes unreasonable demands of teachers or administrators who are genuinely trying their best. In a room where these professionals are making major determinations about your child’s future, the idea of saying anything that could upset them or make them feel like you don’t approve can be extremely scary.

If these are the settings in which we will be discussing parental advocacy then how do we define parental advocacy, anyway? While there are a variety of definitions from those in the dictionary to those in guides from groups like Autism Speaks (which is a common starting place for caregivers who do not know about the history of Autism Speaks), we feel that the following definition most accurately describes the type of advocacy we will be using.

To get a little more specific, let’s look at a few different common educational settings for autistic students where parents can play an advocacy role and what that role might look like.

• Parent advocates can request an evaluation by reaching out to the director of special education or the principal of their child’s school.
• Parents can seek out an Independent Education Evaluation if they disagree with the evaluation provided by the school.

• Parents can seek out early intervention services prior to their child reaching school age under the umbrella of IDEA.
• Parents can seek out early intervention providers outside of their local schools’ programming.
• Parents can make an effort to maximize their relationship with first-line professionals.

• Parents can notice that their child is not receiving a particular service and ask their points of contact at the school why this is the case.
• Parents can request a copy of their school district’s Section 504 plan to ensure they are on the same page as the school district. 
• Parents can challenge districts that refuse services through a due process hearing.

• Parents can have a discussion with their child prior to any IEP meeting to ensure that the things the parent is advocating for match as closely as possible with their child’s needs. 
• Parents can participate in a collaborative environment with school professionals to come to an agreement on the best path forward for their child.
• Parents can insist their child be heard at IEP meetings to whatever extent their child wishes to be heard.
• Parents can engage in a number of formal and informal dispute resolution processes when cooperation does not work as intended.

• Parents can have a discussion with their child prior to any ITP meeting to ensure that the things the parent is advocating for match as closely as possible with their child’s needs. Parents can support and have the back of children who wish to exercise more personal autonomy in school meetings regarding their education and future.
• Parents can request that a school initiate transition services if their child has reached age 16 without receiving any.
• Parents can ask teachers and professionals about resources that may be available after their child graduates, even if the school does not have the same legal obligation to let parents know about every potential post-graduation resource that could exist.

• Parents can coordinate their child’s therapist’s recommendations with those of the IEP to build a more comprehensive plan that leverages everyone’s expertise. 
• Parents can weigh the advice of different therapists and the efficacy of different interventions.
• Parents can choose a different therapist or therapy if the current one is not meeting their child’s needs.

• Parents can advocate to medical practitioners when they feel their child is not being listened to.
• Parents can seek out providers who are better equipped to accommodate their child’s needs. 
• Parents can develop a game plan for communicating with medical staff in the event of an emergency.

• Parents can seek out allies in the community who will help cultivate accepting situations. Parents can make other community members aware of accommodations that will make it easier for their child to participate in community events and activities.
• Parents can negotiate with individuals who are not especially interested in or sensitive to their child’s needs but can nonetheless be reasoned with.
• Parents can check in with their child to the best of their ability to ensure that they are still advocating on behalf of their child first and foremost.

• Parents can start thinking about their child’s transition plan long before the school is required to participate.
• Parents can communicate with their child about their future goals and make plans with their child on how to achieve them.
• Parents can communicate with teachers about their child’s goals and the ways that the school can be a collaborator in working toward those goals.
• Parents can seek out the advice of other parents who have been through a similar process in the same school system for more localized next steps.

• Parents can begin the process of applying for special assistance in adulthood well before their child reaches that age.
• Parents can connect with other parents in support groups to identify and source local community resources.
• Parents may or may not be involved with agencies and organizations in the rolling out of services (e.g., job coaching, direct support care, transportation).
• Parents can apply for SSI, the Medicaid Waiver in their state, and other autism waivers if available in their state.