Services for autistic adults with complex needs

Supporting an autistic person with significant support needs involves a personalised and thoughtful approach that takes into account their unique strengths and abilities. 

By providing individualised support, maintaining consistent routines, and building a strong support network with the right service providers, we can help create a fulfilling and happy life for them. Understand how to support an autistic adult as well as your own wellbeing when navigating service providers and managing daily routines.

Navigating service providers 

Finding the best service providers for an autistic individual with complex support needs can be a time-consuming process. Starting with centre-based care can be a good strategy for families who are new to the process. It allows them to establish a routine while exploring other options that better suit their family over time.

Knowing what makes a good service provider is an important first step in this process. Any provider that works with an autistic adult with significant support needs should take a strengths-based approach, meaning the focus is on the individual’s strengths and abilities rather than what they struggle with. This also includes the provider actively involving the autistic adult in discussions and decision-making where possible.

Service providers should always be willing to communicate frequently and transparently with families and carers. They should be respectful of your opinions, open to hearing your perspectives, and proactive in raising any issues or concerns. They should also be willing to understand an autistic adult’s support needs and make accommodations to programs and procedures where necessary. 

It is essential to be flexible and open to change. If a valued employee leaves a service, it might be necessary to explore other options. Keep an open mind, as a service provider that may not have suited your loved one may improve or change their programs, making them a suitable option in the future. 

Families should feel empowered to advocate for the highest quality of services for their loved ones. This can involve providing feedback to service providers, participating in community discussions, and staying informed about the latest developments in autism support services.

The needs of an autistic individual can change over time, so it is essential to review and adjust care plans and support services regularly. This might involve changing service providers, exploring new activities, or modifying existing programs to continue meeting your loved one’s needs and preferences.

Social and community participation and the NDIS

Everyone has the right to meaningful social and community participation opportunities. The National Disability Insurance Scheme (NDIS) has empowered many autistic people to access diverse options, supporting their development and wellbeing.

Examples of social and community participation activities that the NDIS could fund include:

• Volunteering at animal shelters
• Delivering newspapers or leaflets
• Creating music in a studio with a musician
• Participating in exercise classes
• Visiting the gym
• Volunteering for local charities
• Visiting places of interest

Some people with autism prefer the consistency of attending a day program five days a week. This regular contact with the same people and environment can provide a sense of stability and comfort. Others benefit from a more varied schedule, participating in different centre-based programs or community activities throughout the week. These activities not only provide social interaction but also help develop new skills and interests, contributing to a more fulfilling life.

Tips for day-to-day life

Outside of more formal support provided by healthcare professionals and the NDIS, families should consider the following suggestions for managing day-to-day life as a family caring for an autistic person with high support needs:

Build a support network 

Creating a strong and positive support network is crucial for supporting an autistic individual. This network can include healthcare professionals, support workers, educators, and other families who have loved ones with significant support needs. Regular communication with people in this network can help the individual and their family receive advice, compassion and care they need. This support network can also help you advocate for quality services, find new or improved services, and manage mental health and wellbeing. 

Include special interests

Many autistic people have special interests and passions. Whether it’s prehistoric animals or a particular TV show, involving these interests in outings and community-based activities can make them much more engaging. For example, visiting a dinosaur exhibition at a museum or downloading their favourite movies or songs for them to play in the car can increase excitement and reduce anxiety. 

If an autistic adult receives assistance from support workers or other service providers, speak with them about using this strategy to increase engagement and participation. This can make it easier for an autistic adult to form a positive relationship with these individuals and helps them to be more prepared when supporting them in the community. 

Consider safety

Safety should be the top priority for every person who supports an autistic adult with high support needs. This is particularly important in the community, where there are more safety risks and triggers for behaviours of concern that lead to safety concerns, such as absconding. Our website contains more information around prioritising safety for autistic adults with significant support needs in the community.

Encourage independence

Encouraging independence in daily activities can improve the quality of life for autistic individuals with significant support needs. This can include developing life skills such as cooking, cleaning, personal care, and participation in community activities.

Embrace technology

Technology can be a valuable tool in supporting autistic individuals. Various apps and devices can assist with communication, organisation, and learning new skills. Families should explore technological solutions that can support the independence of their loved ones.

Prioritise family wellbeing 

Supporting an autistic adult with significant support is rewarding, but also involves a lot of time and energy. It is very important for anyone involved in this support, such as parents, carers and siblings, to prioritise their own health and wellbeing to avoid burnout. Making self-care part of your daily routine and seeking external support when needed can help families maintain their energy and resilience in order to be the best advocate for their autistic family member.

An interview with Wendy (Alex’s mum)

Advice from other families with autistic adults who have high support needs can be hugely validating, but there’s rarely the opportunity for these families to share their stories. We spoke to Wendy, mum of Alex, about her experience caring for an autistic adult with significant support needs and what has helped her along the way.

‘I can design the week around Alex’s interests. He has funding both from his Core Supports budget and from Capacity Building Relationships budget. He has funding which pays for regular physiotherapy, speech therapy and occupational support. Alex attends a centre-based program three mornings a week. He enjoys spending time with the young support workers there as well as other young people similar to himself, his friends. He will go there more often in the future.

For my son it is all about having the right people around him, both the other participants and the support staff. We have learned that he is confident and happy in the company of young adults who have a significant intellectual disability, without a co-occurring autism diagnosis. He is triggered by being around people who have autism with high support needs, like he does.

Families and people with autism are in a position now where there are lots of good service providers around, large and small. Programs can be designed around the interests of the person with autism, and every day can be different if that works for them.

For Alex, the advantage of centre-based programs is that he can get to know other participants and can make friends there, and friends are really important to him.

We have found that there are times when a really good employee leaves a service and we decide to leave too. I always say that it is best to move around if you need to, and not to burn bridges. You never know when a service might change their employees or programs and be an excellent place to attend again.

There is a lot of work involved in finding the best service providers for your young person, it can take a lot of time. So for some families, just starting off with your child in centre-based care for most of the week can work well. That gives you time to explore all the other options.’