About Us
Standing beside those with the highest and most complex autism support needs, especially those without a voice in public systems, and calling for protection before tragedy occurs under ROBONDIS.
When a system cannot see those most at risk, it will fail to protect them. We are here to make sure that failure can no longer be ignored.
Shining a light where systems have looked away
We stand for profoundly and severely autistic children and adults who cannot speak for themselves, who cannot keep themselves safe, and who depend entirely on others to survive.
The Profound Autism Network exists because these children are being missed, misunderstood, and left unprotected by systems that should know better.
Profound autism is not a mild or flexible condition. Profound autistics are not capable of masking. Profound autism is a designation used for autistic individuals, generally aged seven years and older, who require 24-hour, lifelong care due to severe support needs. It is characterised by little or no functional speech, significant intellectual disability, often with an IQ below 50, and an inability to manage basic safety or daily living without constant supervision (Lord et al., 2022).
These children cannot reliably communicate pain, danger, or fear. Many cannot understand a warning, follow a simple instruction, or recognise a life-threatening risk. They are drawn to water, roads, strangers, and unsafe environments. They are at high risk of elopement, drowning, serious injury, and death. Many live with severe self-injury or aggression, not by choice, but because they cannot regulate or communicate their needs.
This is the reality. It is not rare. It is not temporary. It is not something a family can manage on its own.
We also stand for younger children, under the age of seven, who already show these same patterns of profound impairment and risk. Waiting for a label at age eight does not protect a child. Early recognition and early protection save lives.
Too often, these children are lost inside a broad autism policy that does not reflect their level of impairment or risk. Their needs are diluted. Their vulnerability is overlooked. Their families are left to carry an impossible burden of supervision, fear, and responsibility, often while being told to cope with less.
When the system fails to recognise risk, the outcome is not inconvenience. The outcome is harm.
We have seen it in drownings. We have seen it in absconding. We have seen it in school exclusion, in preventable injury, and in families pushed to breaking point. Afterwards, the questions are asked. Reports are written. Responsibility is deflected. Nothing changes soon enough for the next child. That must end.
The Profound Autism Network is a carer-led, evidence-driven movement for systemic change in Australia. We advocate for recognition of profound autism as a distinct and high-risk group. We call for safeguarding to come before process, and for systems to respond to the level of impairment, not the convenience of policy.
We are calling for:
- Early identification of children with profound support needs
- Risk-based assessment and funding
- Mandatory safeguarding for those who cannot keep themselves safe
- Specialist communication, behaviour, and medical supports
- Safer childcare and inclusive school environments that understand risk
- NDIS reform that recognises severity, not averages
This is not about luxury or preference. It is about survival.
Australia must stop waiting for tragedy before it acts. It must stop asking families to prove risk after harm has already occurred. It must stop treating profoundly disabled children as though they are the same as those who can live independently.
Leadership means seeing clearly, acting early, and protecting properly. We believe this country will be judged by how it protects its most vulnerable children. Right now, we are falling short.
The Profound Autism Network exists to ensure that profoundly autistic children and adults are seen, protected, and prioritised with the urgency their lives require.
Together We Can Better Protect the Most Vulnerable Autistic Children
The Profound Autism Network is building public pressure where it matters most: making profound autism visible, forcing earlier recognition of risk, and pushing systems to act before harm occurs. This is how private burden becomes public evidence, and public evidence becomes reform.
Make profound autism visible
We are making visible the children and adults whose vulnerability, dependence, and risk have been obscured for too long inside systems that do not recognise them clearly enough to protect them properly.
Push for risk-based reform
We are calling for systems that identify risk earlier, respond with urgency, and stop waiting for crisis, collapse, or tragedy before they take profoundly autistic people seriously.
Turn lived experience into evidence
We gather family experience, document risk, track carer burnout, and expose planning failure, so what families carry in private becomes evidence that decision-makers cannot dismiss.
Build pressure for systemic change
We are not here for symbolic acknowledgement. We are here to change research, policy, planning, safeguarding, and public understanding so that profound autism is recognised as it is actually lived.
Our Campaigns
The risks are impossible to ignore
Safeguarding
24/7 Safeguarding
Profound autism must be recognised as a safeguarding issue. Safety begins with seeing vulnerability clearly and responding before harm occurs.
Recognition
Our Recognition
Profoundly autistic children are disappearing inside generic autism policy without ever truly being seen. Recognition is the first step to protection.
Early Intervention
Early Intervention
Early intervention is not only about development. It is also about safety, family stability, and reducing the cumulative risk of harm before a crisis takes hold.
Safe and included
AMSafe Childcare Reform
Families know where the danger points are. We turn lived experience into evidence by documenting risk, service gaps, and inclusion failures.
My bright future
MySecure Future School Reforms
Profoundly autistic students need more than placement. They need schools that understand communication, regulation, risk, dignity, meaningful support and real inclusion.
Systemic Reform
Evidence-based NDIS Reform
The NDIS must recognise profound autism as a distinct high-support, high-vulnerability profile. We are organising families, building evidence, and pushing for risk-based triage, better planning, and real representation.
How You Can Help Us
Donations
Completely unfunded. Driven by madness. Compelled by love, necessity, and duty to our children.
We receive no government funding, no institutional backing, and no financial safety net. We do this work in our own time, at our own expense, and often at a personal loss, because we know there is no work more important than protecting our profoundly autistic children.
We stand for a profoundly vulnerable cohort that is too often ignored until a crisis strikes. What drives this campaign is not theory alone, but lived experience: families transforming hardship into evidence, evidence into policy, and policy into pressure for lasting reform.
Your donation makes that work possible. It supports research, surveys, campaigns, public education, policy work, and advocacy for a disability system that responds to risk before tragedy, and safeguards profoundly autistic children and young people before irreversible harm is done.
Volunteer
Entirely volunteer-led. Compelled by love, necessity, and duty.
We do this work because protecting profoundly autistic children and young people is too important to leave undone.
Volunteers are the force behind this movement. From professional expertise and research support to writing, administration, outreach, and campaign work, every contribution helps bring profound autism into the public eye and into the rooms where decisions are made.
Your time or donation helps transform lived experience into evidence, evidence into policy, and policy into urgent reform, building the pressure needed to protect a profoundly vulnerable cohort before crisis and irreversible harm occur.
Partnership
Welcome Partnerships. Understand Profound Autism. Deliver Smarter Risk-Based Reform.
We receive no government funding and are entirely unfunded. We rely on partnerships with clinicians, academics, researchers, media, policymakers, advocates, carers, service leaders, organisations, and community allies who share a commitment to change.
Together, we ensure profoundly autistic people are recognised within systems as genuinely vulnerable—and are met with urgency, dignity, and the care they deserve.
Support
Every voice. Every action. Every connection counts.
Support can take many forms. You can help by sharing our message, amplifying our campaigns, contributing lived experience, gathering data, documenting stories and coronial matters, connecting us with decision-makers, or standing beside families calling for safeguarding, recognition, and systemic reform.
What is your network’s mission?
The Profound Autism Network exists to drive systemic change, so profoundly autistic people and severely autistic children (under 7 years of age) are recognised properly, risk is identified earlier, and families are not left carrying impossible levels of danger alone. There is a role for everyone in that work.
What is the Profound Autism Network?
The Profound Autism Network is a severely and profoundly autistic families-led, evidence-driven movement for systemic change. We exist to ensure profoundly autistic people and severely autistic children (under 7 years of age)are recognised properly in research, policy, planning, and safeguarding, and that families are not left carrying preventable risk alone.
Please note: We do not provide one-to-one advocacy, case management, or individual representation. Our role is systemic reform for this special subgroup. We work to change the conditions that force families to fight the same battles for recognition, safety, and support again and again.
How can I help?
You can donate, volunteer, partner with us, share our campaigns, contribute lived experience, support our data collection, and help amplify the call for reform. Change happens when private burden becomes public evidence and public evidence becomes pressure for action.
What change is the Profound Autism Network fighting for?
We are advocating for a risk-based disability system that recognises profound autism as a distinct, high-support, high-vulnerability profile. That includes earlier recognition of risk, safeguarding, risk-based triage and assessment, stronger early intervention, and policy that reflects the real intensity of lifelong care and family burden.
