Supporting Children with Level 3 Autism: A Parent’s Perspective

As an allied health professional with 17 years of experience, and a parent of a child with non-verbal, severe autism and multiple medical conditions for over 12 years, I understand firsthand the challenges and joys that come with raising a child on the spectrum. Through this journey, I’ve gained valuable knowledge that I’m passionate about sharing with other parents, especially those caring for children diagnosed with Level 3 Autism. Early understanding and support can truly be a game changer for your child’s development and quality of life.

Understanding Level 3 Autism: Requiring Very Substantial Support

Children diagnosed with Level 3 Autism Spectrum Disorder (ASD) have the highest level of support needs under the DSM-5 criteria. They face severe challenges in communication, social interaction, and behavior, requiring ongoing and intensive care.

Key Characteristics of Level 3 Autism

1. Significant Communication Challenges: Children with Level 3 autism often have very limited or no verbal communication. They may struggle to express basic needs and emotions, which can lead to frustration and behavioural outbursts. Supporting their communication is one of the most crucial steps in helping them feel safe, understood, and connected.

2. Extreme Rigidity and Repetitive Behaviours: A strong need for routine and sameness is common. Even small changes—like taking a different route to school—can cause intense distress. You might notice repetitive actions like hand-flapping, spinning, or repeating certain sounds or phrases. These behaviours often help manage anxiety or sensory overload but can also make daily activities more challenging.

3. Sensory Sensitivities: Many children experience either hypersensitivity or hyposensitivity to sensory input such as noise, light, touch, or smell. Environments that may seem ordinary to others can be overwhelming and even painful for them.

Common Behaviours to Be Aware Of

Limited CommunicationNon-verbal or minimally verbal children may cry, scream, or display self-injurious behaviour when they are unable to express themselves. These actions aren't “bad behaviour” but often a desperate attempt to be understood.

Resistance to ChangeChildren with Level 3 autism may become very distressed when their routine is disrupted. This resistance can affect family plans, school attendance, or even short trips. Understanding this reaction and planning transitions carefully is key to reducing stress.

Intense Repetitive BehavioursRepetitive motions like rocking, spinning, or echolalia (repeating words or sounds) may seem unusual but are often a source of comfort and regulation. However, they may also limit engagement in social or learning opportunities.

How to Support a Child with Level 3 Autism as a parent:

Here are some practical, proven strategies to help you support your child’s development:

1. Apply for NDIS Support

Start by applying for NDIS access—this provides funding for your child’s ongoing needs. A support coordinator can help you find appropriate providers, therapies, and resources.

2. Seek Professional Help Early

• Paediatricians and Developmental Psychologists for diagnosis and care planning

• Applied Behaviour Analysis (ABA) for behaviour and communication strategies. Behaviour therapy may be required to support your child’s behaviours

• Speech and Occupational Therapies to support communication, feeding, and motor skills

3. Create a Predictable Daily Routine

• Use visual schedules or pictograms to provide structure

• Keep routines consistent to reduce anxiety

• Use social stories and timers to prepare for transitions

4. Support Communication Development

• Use AAC tools like PECS or speech-generating devices

• Combine words with pictures, gestures, or sign language

• Keep your language simple, slow, and clear

5. Manage Sensory and Emotional Regulation

• Identify your child’s sensory triggers

• Use tools like weighted blankets, sensory toys, or noise-cancelling headphones

• Create safe spaces and calm-down routines for meltdowns

6. Build a Support Team Around Your Child

• Work closely with teachers, therapists, support workers, and medical staff

• Establish an Individualized Education Plan (IEP) at school

• Keep communication clear and consistent across everyone involved

7. Encourage Social Skills in Small Steps

• Use structured and low-stimulation settings for social interaction

• Celebrate small wins

• Model and reinforce simple social behaviours

8. Don’t Forget to Care for Yourself

• Join a local or online support group for autism parents

• Arrange respite care so you can take breaks and recharge

• Help extended family understand autism to build a strong support network

In our situation, we have consistently and persistently applied this approach, and these steps have proven beneficial over the past 12 years and seem to be effective. I hope they will be helpful to you as well.

You’re Not Alone—We’re Here to Help

If you’re just starting out or struggling with any of these steps, please do

n’t hesitate to reach out. We are here to walk alongside you on this journey. With the right tools and support, your child can thrive in their own unique way.

Author: Hugh Vo , Registered nurse (CNS) and NDIS support coordinator.

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