How to Advocate for Your Autistic Adult’s Medical Needs

How can parents help their adult child access available health services?

There are many healthcare services available for people with autism, but how do you navigate this system once your autistic child has grown into an adult? This presents new challenges not previously faced.

There are steps parents and caregivers can take to make it easier for their loved ones.

Understanding the healthcare system

In the United States, the healthcare system can be broken down into three units:

Primary care

Primary care focuses on the patient’s overall health, covering yearly physicals, family medicine, and pediatrics. Oftentimes, the primary care physician is the first point of contact for health concerns. They can diagnose or recommend a specialist for more specialized care.

Specialty care

Specialists offer patients highly focused care. Their field is narrower, but their vast knowledge equips them to handle complex cases and procedures. Specialists may focus on autism services if they are speech, occupational, or physical therapists.

Insurance

Unfortunately, it takes a lot of money to run the healthcare system. Health insurance can provide financial coverage to families, so they don’t have to pay too much out of pocket.

Common healthcare challenges

Navigating the healthcare system may be challenging for an autistic adult patient. Depending on their support needs, autistic adults may struggle to communicate effectively with their primary care physician. Their sensory sensitivities can also make undergoing routine testing even more difficult.

Parents who searched to find a specifically trained pediatrician to treat their autistic child must now find a physician to treat their adult. Socio-economic and geographical barriers can also challenge that search.

Paying for healthcare services is difficult, and if insurance doesn’t cover the necessary treatment, they may not get it. If it does cover the cost, there may not be a doctor who provides the necessary services.

Unfortunately, autistic adults often have co-occurring conditions that may require more comprehensive care.

Building a support network

When navigating the healthcare system, autistic adults will need a strong support network of those they can trust to help guide them. Often this will include family members and close friends.

Autistic adults might also use community services to help with transportation and filling out paperwork. These services can play a major role in building a that can help navigate the healthcare system.

Effective communication with healthcare professionals

From the pre-appointment paperwork to the treatment needs, effective communication is key. Yet for many autistic adults, communicating with their doctors is challenging.

There are ways to help autistic adults and their support systems communicate with their doctors more effectively.

Preparing for appointments

Gather the necessary documents for the appointment, including the patient’s relevant medical history and any medications they may take.

Creating a physical or electronic public health record that is easily accessible to the caregiver, the doctor, or the patient for each appointment can be helpful.

The autistic adult may struggle to collect these documents on their own, especially if parents did this when the individual was younger. It may be necessary for the caregiver or an appointed individual, such as a sibling or trusted friend, to handle this task.

If the autistic adult is able, there are self-advocacy tools to help them prepare for their appointments. Some tools will generate customized accommodations or a mental health advance directive that outlines treatment and trusted health representatives.

Communicating needs

The support system can also create an “all about me” document listing vital information beyond medical documentation to relay to the doctor. This can include communication preferences and sensory sensitivities.

Depending on the patient, these documents can include written summaries or visual aids that improve communication between the patient and doctor.

Some autistic adults may be able to clearly speak about what they need. Others may need to have it written, enlist an interpreter, or use an AAC device to communicate.

Understanding rights and resources

Know your rights and which resources can help you advocate for them.

Patients’ rights

In the U.S., the Americans with Disabilities Act grants all autistic adults:

• • Right to reasonable accommodations: Healthcare providers must make adjustments within reason to ensure accessibility, including communication aids, flexible scheduling, and access to telehealth appointments.

• • Right to make healthcare decisions: Autistic adults are entitled to informed consent, alter or refuse treatment, and create an advanced healthcare directive, if able.

• • Right to make decisions with support: An autistic adult has the right to have a guardian or helper make decisions for them if they are unable to make the decisions on their own.

• • Right to medical records: Every patient has a right to access their own medical records and treatment plans.

Insurance navigation

Understand what the insurance plans will cover and what will be paid out of pocket. Does the individual have a private or government-funded plan, such as Medicaid?
The type of insurance will determine how much is covered, though any insurance provider covers certain treatments.

To ensure an autistic adult receives the most coverage their plan offers, it’s important to gather necessary documentation and consult the summary of benefits.

Documentation of a formal diagnosis, plus a treatment plan with prescriptions for medications and referrals to necessary therapies, will help ensure coverage if offered under a plan.

Caregivers (and autistic adults) must understand their right to appeal any denial of coverage issued by the health insurer. A strong appeals case must be presented with comprehensive documentation in accordance with the appeals process.

There are advocacy organizations and assistance programs to help the designated support person and the autistic adult file the appeal and help make the case for coverage.

Advocacy strategies

Navigating the healthcare system is not easy. Autistic adults need to be strong self-advocates or have a strong advocate to be their voice.

The advocate must be firm but respectful when presenting their case for the patients’ treatment, communication, therapies, and insurance coverage to ensure the best possible healthcare.

Technology, such as apps and online tools, can help schedule appointments, advocate for communication preferences, and access necessary medical records for a new treatment or an insurance appeal.

Advocating for better health

While navigating the healthcare system can be daunting for the parent of an autistic adult, there are steps to make this a little easier. Advocacy is an important aspect of the journey.

If an autistic adult can advocate for themselves, they can push for their preferred communication and assert their rights as a patient. If they need a support network, their designated advocate can make that push for them.

Autism often comes with co-occurring conditions requiring many different types of healthcare treatment. Working together, autistic adults and their advocates can fight for what is best for them.