Navigating the health system

Navigating the healthcare system can be challenging for anyone, but it can be particularly complex for autistic adults. 

From communication barriers to inexperienced healthcare providers, the journey to receiving appropriate medical care involves numerous obstacles. Below, we explore the specific challenges faced by autistic adults in accessing healthcare and outline strategies to improve their healthcare experiences and outcomes.

Challenges in accessing healthcare

Communication barriers

One of the biggest challenges autistic adults face in accessing healthcare is effective communication. Many autistic individuals find it difficult to communicate their needs and symptoms to healthcare professionals, often leading to misunderstandings or neglect. Different verbal and non-verbal communication styles, which are common in autism, can make it difficult for healthcare providers to understand and address the medical issues accurately. Autistic adults often feel a mix of emotions when attending appointments. Fear, anxiety, embarrassment, or frustration - these emotions can make it difficult to engage with healthcare providers and follow through with treatment.

Complex healthcare needs

Autistic adults often have complex healthcare needs due to high rates of co-occurring mental and physical conditions. These can include diabetes, high blood pressure, heart disease, obesity, autoimmune diseases, hearing impairments, sleep disorders, gastrointestinal problems, and psychiatric disorders such as schizophrenia, depression, and attention deficit hyperactivity disorder (ADHD). The presence of these additional diagnoses adds layers of complexity to their medical care. Many autistic people also experience difficulty identifying and reporting pain and other physical symptoms. Some autistic individuals may struggle to communicate their symptoms effectively.

Lack of awareness and training 

Many primary care doctors and mental health providers are not well educated or trained on how to best support autistic adults. There is often a lack of awareness about the increased risks for various health issues in the autistic population. Autistic adults are almost twice as likely as their neurotypical peers to have conditions like diabetes, high blood pressure, and heart disease, yet many healthcare professionals are unaware of these increased risks and are ill-equipped to manage them effectively in the setting of a patient with autism.

Barriers to healthcare access

Autistic adults face several barriers to accessing healthcare, including gender diversity issues, higher levels of generalised anxiety, and a lack of social support. These factors contribute to lower healthcare engagement and poorer health outcomes. Additionally, the medical and financial burdens resulting from co-occurring conditions can be a further barrier to accessing necessary healthcare services.

Sensory processing differences

Sensory processing differences can also present significant challenges for autistic individuals in healthcare settings. The bright lights, loud noises, and busy, unpredictable environments typical of many medical facilities can be overwhelming, making it difficult for autistic patients to focus on their interactions with healthcare providers and exacerbating their anxiety. This is especially so in hospital and emergency department settings.

Medicare and public healthcare

In Australia, the healthcare system is a mix of publicly and privately funded services. Public healthcare, funded through Medicare, aims to provide universal access to healthcare services. However, Medicare does not cover all costs, leading to out-of-pocket expenses known as the Medicare gap. These additional costs can be a substantial barrier for those with complex and high-care medical needs.

Coordination and wait times

The complexity of Medicare can lead to difficulties in coordinating care among multiple health and allied health professionals. This often results in conflicting information and scheduling problems. Limited resources and long waiting lists in the public healthcare system can delay access to necessary treatments, leading to poorer health outcomes for those unable to afford private healthcare.

Private healthcare

For those who can afford private healthcare or private health insurance, access to earlier treatment is possible through private providers. However, the high cost of private healthcare makes it unaffordable for many autistic adults, who may already be facing significant medical expenses due to their complex healthcare needs.

Differences across states and territories

Each state and territory in Australia operates its healthcare system differently. This variability can lead to inconsistencies in the quality and accessibility of healthcare services across the country, posing additional challenges for autistic adults who may need to move between different regions.

Strategies to overcome barriers

Despite these challenges, there are several strategies that can help autistic individuals navigate the healthcare system more effectively. These include: 

What can healthcare professionals do? 

To help improve healthcare access for autistic adults, we need to begin with better training and education for healthcare providers. This includes understanding the unique healthcare needs of autistic individuals, recognising the increased rates for co-occurring conditions, and developing effective communication strategies. Whilst healthcare providers should receive autism-specific training on how to best support their autistic patients, this rarely is the case, and we need to improve this as a priority. 

Improving communication

Effective communication is vital for successful healthcare experiences. Healthcare providers should be trained in using clear, simple language and visual aids to help autistic patients understand their medical conditions and treatment options. Ideally, they should be patient and take the time to listen to and address the concerns of autistic patients, ensuring that they feel heard and understood. Work together with your patients and their parents/carers to implement more effective communication.

Creating sensory-friendly environments

Healthcare facilities can make adjustments to create more sensory-friendly environments for autistic patients. This might include reducing bright lighting, minimising noise levels, and providing quiet waiting areas. Such changes can help autistic individuals feel more comfortable and less anxious during medical visits, improving their overall healthcare experience.

Promoting self-advocacy

Encouraging and supporting self-advocacy among autistic adults is important. We must ensure they understand their healthcare rights, teach them how to communicate their needs effectively and provide them with the tools to navigate the healthcare system. Self-advocacy can empower autistic individuals to take an active role in their healthcare, leading to better health outcomes.

Navigating the healthcare system can be overwhelming for autistic adults, but with the right strategies and support, it is possible to overcome many of the barriers.