Supporting autistic adults with complex needs

Severe or profound autism, known as Level 3 Autism in diagnostic terms, includes individuals with significant support needs.

Typically, those diagnosed with Level 3 Autism are nonverbal or have limited speech abilities and struggle significantly with social communication. They often have sensory processing issues and find changes in routine extremely challenging. Common behavioural challenges at this level include aggression, wandering (eloping), and self-injury.

People with high support needs face profound challenges and require significant specialist support, often including 24-hour care. Below, we’ll discuss the traits and challenges of autism with high support needs and the therapies available.

Traits of autism with high support needs

Autism Spectrum Disorder (ASD) is classified into three levels based on the intensity of support required:

• Level 1: Requiring support
• Level 2: Requiring substantial support
• Level 3: Requiring very substantial support

Certain traits are common across all levels of autism, such as difficulties with social interactions, communication challenges and repetitive behaviours. However, the severity and impact of these traits vary significantly.

Specific traits of Level 3 Autism

To be diagnosed with Level 3 Autism, these traits must significantly impact daily life. Here are some specific characteristics of autism for those with high support needs:

• Nonverbal or limited speech: Many individuals with Level 3 autism are nonverbal or have limited speech, making communication a significant challenge.
• Restricted social communication skills: Social interactions are often limited, and understanding social cues can be extremely difficult.
• Sensory processing issues: Sensory overload is common, with individuals experiencing heightened sensitivity to light, sound, touch, taste, or smell.
• Resistance to change: Changes in routine or environment can cause significant distress and lead to behavioural challenges.

People with Level 3 autism may have intellectual impairments, but it's not always the case. The main factors for a Level 3 diagnosis are the severity of social communication challenges, restricted and repetitive behaviours, and the need for substantial support in daily life.

Challenges in Level 3 Autism

The challenges faced by individuals with Level 3 Autism are substantial and often require intensive management. Here are some of the primary challenges:

Intense behaviours

Individuals with high support needs may exhibit intense behaviours due to frustration, sensory overload, or physical pain. These behaviours can be confronting and, if unmanaged, potentially dangerous for both the individual and their family. 

Self-injury

Self-injury, such as head-banging and pica (eating non-food items), is more common among those with high support needs. This behaviour often stems from an inability to communicate discomfort or distress.

Aggressive behaviours

While aggression is relatively rare in autism, it can occur, especially among those with severe autism traits or co-occurring conditions like severe anxiety. Aggressive behaviours may include hitting, biting, or kicking and can also involve behaviours like fecal smearing or throwing.

Wandering (eloping)

Wandering or eloping is common among individuals with high support needs. This behaviour involves running away without a clear cause or intended destination. The inability to communicate effectively with first responders intensifies the danger, making the use of special locks, alarms, and identification tools essential.

Therapies and support - NDIS

The National Disability Insurance Scheme (NDIS) offers a range of supports tailored to individuals with high and complex needs. These services are designed to help manage challenging behaviours, facilitate independent living, and improve overall quality of life.

Specialist support coordination

The NDIS offers specialist support coordination for individuals with complex needs. This service assists in managing challenging behaviours and connecting with appropriate services. Specialist Support Coordinators have expertise in working with individuals with severe autism and can provide tailored strategies and interventions.

Supported Independent Living (SIL)

Supported Independent Living (SIL) provides 24/7 support in shared or individual living arrangements tailored to the individual's needs. This support includes assistance with daily living activities, personal care, and social participation, enabling greater independence and improved quality of life.

Capacity Building supports

Capacity Building supports under the NDIS include a range of therapy services aimed at developing skills and managing behaviours. These supports often encompass:

• Speech therapy: Helps improve communication skills, including alternative communication methods for non-verbal individuals.
• Occupational therapy: Focuses on enhancing daily living skills, sensory integration, and fine motor skills.
• Psychological support: Provides mental health care and strategies for managing anxiety, depression, and other co-occurring conditions.

Home modifications

The NDIS funds home modifications to enhance safety and accessibility. These modifications can include installing grab bars, ramps, and adaptive equipment, making the home environment safer and more supportive for individuals with high support needs.

Assistive technology

Assistive technology funded by the NDIS includes devices that improve safety and independence. Examples include emergency alert systems, communication devices, and monitoring systems. These technologies can significantly enhance the quality of life for individuals with severe autism.

Crisis accommodation

The NDIS also funds crisis accommodation for immediate and short-term needs in crisis situations. This service ensures that individuals receive urgent care in a safe environment while families manage the crisis effectively.

Accessible transport solutions

The NDIS provides tailored transport services and funding for individuals with severe disabilities. This support enables participation in community activities, work, or education, enhancing social inclusion and independence.

Accessing healthcare services

Specialised health units within hospitals and health services focus on the medical and health needs of individuals with developmental disabilities, including severe autism. These units offer multidisciplinary care, addressing both physical and mental health needs.

Accessing healthcare services for individuals with severe autism and complex medical needs starts with an initial assessment and referral. This is done by your GP, who is often the first point of contact and can refer individuals to specialised services based on their specific needs. During the NDIS planning process, families can discuss healthcare needs, which may include referrals to specialised health units and services.

Key providers and resources

Several key providers and resources offer specialised healthcare services for individuals with severe autism. Some of these services provide a multidisciplinary approach, including doctors, nurses, therapists and behavioural therapists. Each state in Australia has its own specialised health services for individuals with developmental disabilities. Examples include:

• New South Wales (NSW): Developmental Disability Health Unit (Westmead Hospital)
• Queensland: Queensland Centre for Intellectual and Developmental Disability (QCIDD)
• Western Australia: WA Health Disability Health Network
• Victoria: Centre for Developmental Disability Health (Monash Health VIC)

Specialist advocacy services

Advocacy services play an important role in ensuring that the rights and needs of individuals with severe autism are met. These services provide support in navigating the healthcare and legal systems, and in accessing necessary resources. Key advocacy organisations include:

• Australian Centre for Disability Law: Promotes and protects the human and legal rights of people with disability and their loved ones.‍
• Australian Federation of Disability Organisations (AFDO): Works with industry, government and other organisations to better support people with disability.
• Disability Advocacy Network Australia (DANA): National representative body for independent disability advocates throughout Australia.‍
• First Peoples Disability Network (FPDN): National human rights organisation of and for First Nations people with disability, their families and communities.‍
• Intellectual Disability Rights Service (IDRS): Free service to support people with intellectual disability and cognitive impairment in NSW.‍
• National Council on Intellectual Disability (NCID): Disability rights organisation led by people with intellectual disability.‍
• Women With Disabilities Australia (WWDA): Representative body for women, girls, and gender-diverse people with disabilities across Australia.
• People With Disability Australia (PWDA): Provides advocacy services for people with severe disabilities, including autism.

Respite and short-term accommodation

Respite care and Short-Term Accommodation (STA) services provide temporary relief for caregivers of individuals with high support needs. These services offer a break for families and caregivers while ensuring that the individual receives appropriate care and support in a safe and supportive environment. Types of respite services include:

• Short-Term Accommodation (STA): Provides temporary accommodation with tailored support services. This can range from a few days to several weeks.
• Emergency respite: Offers immediate support during crisis situations.
• Planned respite: Scheduled breaks for caregivers, allowing them to plan their time off while ensuring continuous care for the individual.

Accessing respite services involves various processes. These include:

During respite care

Providers create personalised care plans to ensure that the individual's needs are met during their stay. This includes daily routines, medical needs, dietary requirements, and specific support for managing behaviours. Trained staff provide care and support, ensuring a safe and supportive environment.

Technology and innovation

Assistive technology

Assistive technology consists of devices or equipment that assist individuals with disabilities in performing tasks that might otherwise be challenging or impossible. This technology can also simplify or enhance safety for various activities. Essentially, assistive technology includes any equipment, software, or device designed to help people with disabilities manage daily activities more easily or safely, aiming to improve everyday life.

Telehealth services

Telehealth services provide access to healthcare and support via telecommunication technology, reducing the need for physical travel. This is particularly beneficial for individuals with high support needs who may have difficulty attending in-person appointments.

Using medications

Treatments for autistic individuals with high support needs can often include medications for managing anxiety and related issues. It's crucial to carefully monitor responses to medications, as side effects or negative interactions can pose significant challenges.

Behavioural therapies

Behavioural therapy can be highly beneficial for autistic adults with high and complex support needs by providing structured and individualised approaches to manage and reduce challenging behaviours, improve communication, and teach daily living skills. Behavioural therapy employs evidence-based techniques to teach new skills and reinforce positive behaviours through structured interventions. These interventions can be tailored to address specific challenges, such as aggression, self-injury, and social difficulties, by breaking tasks into manageable steps and using positive reinforcement to encourage desired outcomes. Behavioural therapy also involves close collaboration with caregivers and support teams, ensuring consistency and continuity in care. By focusing on the individual's unique needs and strengths, behavioural therapy helps to improve the overall quality of life, build greater independence, and create a more supportive and understanding environment for autistic adults with complex needs.

Psychology services

Psychology services offer specialised mental health care and strategies for managing co-occurring conditions like anxiety and depression. Techniques such as Cognitive Behavioural Therapy (CBT) can be adapted to help autistic adults develop coping skills, improve emotional regulation, and reduce stress. Psychologists also support families and caregivers, providing guidance on managing challenging behaviours.

Speech therapy

Speech therapy is immensely beneficial for non-verbal autistic adults with high and complex support needs. Speech therapists can introduce alternative and augmentative communication (AAC) strategies, such as communication devices and picture exchange systems, tailored to the individual's needs. This enhances their ability to participate in social, educational, and vocational activities.

Creating a structured environment

Creating a structured environment is important for individuals with high support needs. Establishing a consistent daily routine provides stability and predictability, which is important for their wellbeing. Utilising visual supports, such as schedules, timetables, and visual cues, helps them understand and anticipate daily activities, reducing anxiety and confusion. Additionally, it is important to minimise changes in the routine. When changes are necessary, providing ample notice and support using visual aids or social stories to explain the change ensures smoother transitions and reduces the impact of disruptions.