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

Guest post by Kristine Kenny, MSN, RN, CPN, CAS

What does advocacy mean? According to Merriam-Webster dictionary, advocacy is the act or process of supporting a cause. Children with ASD require a wide range of health related services throughout their childhoods.  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.

How to Advocate for Your Child with Autism Spectrum Disorder (ASD) in a 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 child and the parent. Advocating for your child in these areas is vital, however there are steps to take to make the role of advocacy less burdensome.

Things know before you get started on your advocacy journey:

Common barriers:

• Physician’s knowledge
• Family knowledge
• Language
• Stigma

Physician’s knowledge

It is crucial to understand that not all physician’s or healthcare providers understand the needs of your child with ASD. Studies have shown have that delivering the best care to an autistic individual critically depends on 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 around the numerous other medical related areas that need to be addressed for the child with ASD. Children with autism are a risk for many co-morbid conditions, like seizures and gastrointestinal issues. After the diagnosed of ASD is made, children should be monitored and screened for other conditions that they are at risk for. Getting the proper services and medical care for your child 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 the Developmental Disabilities provide excellent supports that will give guidance to non-English speaking families. We also recommend checking at your healthcare organization for supportive services in this area prior to your appointments. 

Stigma

Stigma can contribute to feelings of rejection and isolation among parents of autistic children and can prevent individuals with ASD from engaging with the healthcare system at all stages of life. Some children with ASD are very behaviorally challenged and can make entering a healthcare system extremely problematic. Sesame Workshop is an amazing website that utilizes over 100 countries with access to multiple different resources for stigmatization issues.

How to Advocate for Your Child

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. In order to be a voice for them, your awareness will help you better to 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 with your child’s diagnosis or who isn’t willing to adapt to their unique needs. Make changes as you see fit.

Prepare your child and HCP 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 up front, but the hope is that your child will have a positive and successful visit the first time. 

Collaborate with your child’s 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 accommodations 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. 

Looking for more information, you’ll enjoy these:

• How to Prepare Your Autistic Child for a Trip to the Doctors
• 5 Early Signs of Autism
• What to do When Your Child Receives An Autism Diagnosis

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.

Kris is a mom of 3, one of whom has autism. She is a pediatric nurse, assistant nursing professor and author. When she has free time, she enjoys exercising, baking and binge watching TV series. Learn more about her at Autism Healthcare Books!