Understanding and navigating public systems

Life as an autistic adult comes with its unique set of challenges, especially when it comes to interacting with many complex systems. 

From healthcare and law enforcement to judicial processes and mental health services, each system has its intricacies that can be daunting. When a non-verbal autistic adult needs to navigate complex systems, the challenges can be even more pronounced. Parents, carers or guardians often play a crucial role in assisting and advocating for their non-verbal adult children. 

Understanding the healthcare system

The healthcare system is a maze of appointments, paperwork, and confusing terminology. Here are some strategies to help manage healthcare interactions whether you are an autistic adult or a parent/carer:

• Prepare for appointments: Write down symptoms, questions, and concerns before an appointment. This will help you remember to discuss anything important.
• Use clear communication: Clearly state your needs/your autistic person’s needs and preferences. Provide the medical professional with a printed or hand-written hard copy, if that helps. Include any sensory sensitivities and known triggers.
• Request accommodations: Ask for accommodations such as longer appointment times, a quiet waiting area, or the presence of a support person during medical procedures.
• Bring a support person: If possible, bring someone you trust to appointments. They can help advocate for you and help you understand the information provided.
• Use technology: Use apps and online portals to manage appointments, medication schedules, and medical records. This can help keep everything organised and accessible.
• Use Augmentative and Alternative Communication (AAC): Ensure nonverbal adults, of those who prefer it, can access AAC devices or methods they are comfortable with, such as picture boards, tablets, or communication apps.
• Follow up in writing: Request written summaries of appointments and treatment plans. This helps ensure a clear record of what was discussed and agreed upon.

If you are in Victoria, a Disability Liaison Officer (DLO) may be able to help you or your autistic loved one access healthcare services. Learn more here.

Police and first responders

Interacting with police and first responders can be stressful, especially in emergency situations. These interactions can differ widely depending on the situation and how you are involved. Here are some tips to help manage these interactions:

• Carry an autism ID card: An ID card that explains you are autistic can be helpful in situations where you cannot communicate effectively. If your adult child is nonverbal make sure their communication methods and sensory needs are included.
• Stay calm and composed: Practice techniques to stay calm in stressful situations. Deep breathing or having a small, comforting object can help.
• Educate local authorities: If you are comfortable, consider informing your local police station about your autism. Some areas have special registries or programs to help first responders interact more effectively with autistic individuals.
• Use clear and simple language: When interacting with police or first responders, use clear and simple language. If you need extra time to process information, let them know.
• Know your rights: Familiarise yourself with your rights when interacting with law enforcement. This knowledge can help you feel more confident and secure.

If you are in Victoria, a Disability Liaison Officer (DLO) may be able to help you or your autistic loved one access police services. Learn more here.

Navigating the judicial system

The judicial system's formal procedures and legal jargon can be particularly overwhelming. Seeking legal aid if you cannot afford a lawyer is crucial, as professional representation can provide much needed support. Understanding legal terms and processes is important, and resources are available to explain these in more straightforward language. Courts must provide reasonable accommodations under the law, such as having a support person present or allowing breaks during long proceedings. Thorough preparation for court appearances, including organising necessary documents and practising what you must say, can help reduce anxiety. Keeping track of all court dates, deadlines, and required actions, using a calendar or reminder app, helps you stay on top of important events.

Engaging with the mental health system

Mental health services are essential but can be challenging to access and navigate. Finding mental health professionals who have experience working with autistic individuals is important for quality care. 

Setting clear goals for your mental health support helps both you and your health provider stay focused. Open communication about your needs and preferences is important, and if certain therapeutic approaches don’t work for you, let your provider know. Support groups for autistic individuals can provide additional support and insights. Being aware of available mental health services, including community resources and online support options, is also beneficial.

​​Engaging with the mental health system for non-verbal adults requires finding experienced providers, setting clear goals, utilising AAC devices in therapy sessions, involving support networks, and monitoring progress regularly. Appointments can be made more manageable by preparing a sensory kit, communicating sensory needs to staff, requesting private spaces, bringing a support person, and using visual supports.

Navigating hospitals

Hospitals can be overwhelming environments with bright lights, noises, and lots of activity. Here are some strategies to make hospital visits more manageable:

• Create a sensory kit: Bring a sensory kit with items that help you stay calm, such as noise-cancelling headphones, sunglasses, or fidget tools.
• Communicate sensory needs: Inform hospital staff about your sensory sensitivities and other specific needs. They can often make accommodations to help you feel more comfortable.
• Request private spaces: If possible, request a private room or a quieter area to reduce sensory overload.
• Have a support person: Bring someone who can advocate for you and help you understand medical information and decisions.
• Use visual supports: Ask for visual supports, such as diagrams or written instructions, to help you understand procedures and treatments.

Interacting with Centrelink

Centrelink is responsible for delivering social security payments and services in Australia, and can be tricky to navigate. Understanding what benefits and services you are entitled to is the first step. 

Keeping detailed records of all interactions with Centrelink, including dates, names of representatives, and information provided, helps maintain what has been discussed. Don’t hesitate to seek help from advocacy groups or social workers who can assist in dealing with Centrelink. 

Preparing thoroughly for appointments, bringing necessary documentation, and using Centrelink’s online services to manage accounts and submit documents can save time and reduce the stress of in-person visits.

For non-verbal adults, general safeguarding tips for parents and guardians include building a trusted support network, staying informed about changes in policies and procedures, developing self-advocacy skills, planning ahead, and taking care of your own health.

Further education

If you or your autistic loved one is pursuing further education, either at university, TAFE, a private college or in the community, you may be wondering what option is best and how to access accommodations to support learning and wellbeing. You may also be wondering whether you or your loved one should disclose an autism diagnosis, and what the benefits and drawbacks might be in your personal situation. You can access our section on navigating further education for further information and advice.

The NDIS

Whether you are applying for the NDIS, have just received your first plan or have been a participant for years, the NDIS can be complicated to navigate. From understanding the eligibility requirements when applying to requesting a review of a decision you are unhappy with, there are lot of processes to become familiar with, many of which are quite complex. You can visit our section on funding and the NDIS for autistic adults for more information.

General safeguarding tips

Navigating complex systems as an autistic adult, particularly nonverbal individuals, can be challenging, but with the right strategies and support, it is possible to manage these interactions effectively. By preparing in advance, communicating clearly, and utilising available resources, you can safeguard your wellbeing and achieve better outcomes. Building a trusted support network of friends, family, and professionals is important for providing support and advocacy when needed. 

Staying informed about changes in policies and procedures within the systems you interact with can help you navigate them more effectively. Developing self-advocacy skills is important, as it can help you to express your needs and rights and ensure that they are respected.

Remember, you are not alone; many resources and support networks are available to help you navigate these systems. Stay informed, stay organised, and don’t hesitate to seek help when needed.

Sometimes, autistic people and their loved ones can find themselves in situations where they aren’t being heard, understood or respected when navigating complex systems. This is upsetting and frustrating, and in some cases, can be considered discrimination. Seeking support from a disability advocate can help you or your autistic loved one to navigate these systems more successfully while ensuring your rights are protected.

In serious instances of disability discrimination or abuse, making a complaint to the Australian Human Rights Commission may be necessary for the situation to be resolved. A complaint to the Commission should be made when all other options to address the issue have been exhausted, or you or your loved ones cannot access traditional support options or do not feel safe to. You can learn more about your rights around disability discrimination and making a complaint here.