How to Advocate for Your loved one with Autism Spectrum Disorder (ASD) in a Medical Setting

Parents of children with ASD want what is best for their child. Due to the nature of the communication and social deficits associated with ASD, parents need to be a voice and advocate for their child in multiple settings. Here we will break down how to be the best advocate in a medical setting.

introduction

What does advocacy mean? According to the Merriam-Webster dictionary, advocacy is the act or process of supporting a cause. People with ASD require a wide range of health-related services throughout their lifespan.  Advocacy is needed to help guide them through the dynamics of an ever-changing healthcare environment. Parental advocacy is the most common form of advocacy that we see in the medical setting.

Healthcare systems are dynamic, busy, and constantly changing systems. These systems can be difficult and confusing to navigate for many people, let alone those with a communication disorder and social deficits. Sensory issues associated with ASD clients can make this experience very unfavorable and overwhelming for both the person with ASD and the caregiver. Advocating for your loved one in these areas is vital, however, there are steps to take to make the role of advocacy less burdensome.

Things to know before you get started on your advocacy journey:

Physician’s knowledge

It is crucial to understand that not all physicians or healthcare providers understand the needs of your loved one with ASD. Studies have shown that delivering the best care to an autistic individual critically depends on a physician’s knowledge and training. Unfortunately, Pediatric RESEARCH has indicated that many physicians lack the specialized knowledge to care for those on the spectrum. In addition, United States medical students have reported not receiving sufficient training on treating autistic children and in their ability to manage care for them.

Family knowledge

The role of the parent and family in advocacy is an ongoing process throughout the child’s life. To be an effective advocate, parents do need to educate themselves about the numerous other medical-related areas that need to be addressed for the child with ASD. Individuals with autism are at risk for many co-morbid conditions, like seizures and gastrointestinal issues. After the diagnosis of ASD is made, the person should be monitored and screened for other conditions that they are at risk for. Getting the proper services and medical care for your loved one can be a daunting task at first. However, knowing why these services are needed can help make this process less intimidating.

Autism Speaks, CDC, and the National Institute of Mental Health: Autism Spectrum Disorder are websites that offer a plethora of educational materials to increase your knowledge base.

Language

Pediatric RESEARCH states that language barriers hinder access to and navigation of healthcare services for ASD in the USA and Canada for whom English is not the first language. Autism Speaks and the University of Southern California, Center for Excellence in Developmental Disabilities provide excellent supports that will give guidance to non-English speaking families. We also recommend checking your healthcare organization for supportive services in this area before your appointments.

In addition to language barriers, individuals with ASD benefit greatly from visual forms of communication or written. Most healthcare providers explain things verbally and very fast. This is not adequate or appropriate for ASD clients. Request speech services be involved if your loved one is admitted to the hospital to assist with visual communication.

Stigma

Stigma can contribute to feelings of rejection and isolation among parents of autistic children and adults. This can prevent individuals with ASD from engaging with the healthcare system at all stages of life. Some people with ASD are very behaviorally challenged which can make entering a healthcare system extremely problematic.

 How to Advocate for Your Loved One

Awareness

Awareness of your child’s diagnosis, their risks for other medical conditions, and having the right supports in place for your child is critical. You know your child the best. To be a voice for them, your awareness will help you better advocate. If you are not happy with the care you receive from a provider or don’t like how your child was treated, you do have choices and options. You don’t need to stay with a provider who isn’t knowledgeable about your child’s diagnosis or who isn’t willing to adapt to their unique needs. Make changes as you see fit.

Prepare your loved one and Healthcare Provider for the visit.

Preparing yourself and your child is crucial to obtaining the best possible visit. We recommend Autism Healthcare Books. These visual communication books are a great tool to help with medical visits.  Another recommendation would be to call the office manager after you have made the appointment to discuss your child’s needs. You can work with your provider to make sure they are prepared for your child. It might take some time upfront, but the hope is that your child will have a positive and successful visit the first time.

Collaborate with your Healthcare Provider

You, your child, and your child’s provider are a team. It takes all of you to make it all work.  Autism Spectrum News states that collaboration is especially important for individuals who cannot self-report symptoms as the collaborations can result in increased advocacy and earlier detection of possible medical comorbidities. If you feel that your HCP or ancillary staff is not on board as a team, request a meeting with the office manager and talk about ways to improve to make the visit more successful. Work with them as opposed to against them. Offer suggestions and ways to make a plan of action.

Understand your child’s rights

The Americans with Disabilities Act (ADA) is the main law that requires equal access to healthcare for people with disabilities, including people on the autism spectrum. You should familiarize yourself with this law, so you know how it applies to your child in healthcare and how to get accommodation for equal access. The Academic–Autistic Spectrum Partnership in Research and Education (AASPIRE) website is an excellent resource to help both the individual with autism, the caregiver, and the HCP.

Key Takeaways

Advocating changes as your child’s needs change. Advocacy takes time and patience. Your advocacy efforts will change as you go through this journey with your child. Take it one step at a time. Knowing what barriers that you may encounter up front and keeping your expectations realistic but knowing your rights are the key components to this role. They are also a good foundation to get you started. Always remember, you know your child the best. You are your child’s voice. You are an essential part of the team and collaboration of any medical need for your child. Your love for your child will take you places you never thought it would along this journey.