To whom it may concern,

I am writing to make a submission regarding the proposed changes to the NDIS, particularly the proposed cuts to supports around social and community participation and capacity building.

I wanted to share my personal experience as someone whose life was profoundly shaped by growing up as an undiagnosed neurodivergent child and later becoming a disabled adult reliant on supports to remain stable and safely in the community.

I believe my story demonstrates the long term human and financial cost of failing to provide appropriate early intervention and ongoing supports.

Please note that some aspects of this submission may be distressing to read.

Thank you for taking the time to read my experience.

My submission below.

I wanted to share my experience. I think my story is a really good example of why early intervention is so important, saves lives, and saves taxpayers billions over the years. Of the human cost of falling through the cracks.

I also want to specifically address the proposed cuts to supports around social and community participation and capacity building. These supports are not extras or luxuries. For many of us they are the difference between surviving and collapsing, between staying connected to the community or ending up back in hospitals and crisis services. I will explain throughout my story why these supports matter so much.

A warning that this may be difficult even triggering to read.

Like most other neurodivergent people I grew up in a neurodivergent family, not that we knew it back then. A long line of eccentric geniuses who had big struggles with life.

I was born in the late 70s, and I did not speak until almost 5. This was despite being eperlexic and being able to read, write, and do addition, subtraction and some times tables before I started school. I needed physio as I had issues with mobility and balance that could not be attributed to any reason, they just were there. I struggled to make friends with other kids, and had big sensory issues. I rarely slept through the night, at a young age I learnt that

My Experience Growing Up

It wasn’t safe to bother mum so I would lay awake most nights quietly. In hindsight, were I a kid today, I would have been diagnosed fairly young with at the very least, Autism. As an adult I now have a diagnosis of Autism level 2 and inattentive ADHD, plus CPTSD from everything that happened over the years. But this was the 1980s, and girls simply did not have autism in the 1980s, and if a kid had autism they weren’t also able to have ADHD. Not to mention that if I had been diagnosed with something like that my mum would have simply died from the shame of it. This was a time when any kind of “mental illness” was talked about in hushed voices, a time that kids would insult each other that they might end up at the loony bin (referring to local mental hospital).

By 5 years old, I was struggling with eating and drinking enough to really worry my mum. I was hiding food in plants, feeding it to the pets, food I had previously happily eaten, and I was refusing to drink water. When I did eat it was a very narrow list of safe things and it had to be only from a certain bowl or plate from a certain fork or spoon.

This being the 1980s, it was a time of kids doing what we were told or you would get a hiding, kids being given their uneaten food and not allowed to eat anything else until it was gone. Believe me my mum tried, and my mum was a strict disciplinarian, I have a lot of memories of crying, being so hungry my stomach hurt, and still not being able to eat the thing. Or of eating the thing, and promptly vomiting from repulsion. This was not an issue of discipline. Things got so bad I was having regular IVs at the doctor to address the dehydration. At 5, I was having weekly IVs then going to school after. These days, I would have been diagnosed with ARFID, which is extremely common in neurodivergent children, and given feeding therapy and capacity building supports to help me learn to manage sensory issues and daily functioning before things became life threatening.

I also struggled in other ways. I was extremely good at school, very compliant, well behaved, polite and hard working, but I didn’t escape the wrath of my teachers. I was regularly pulled up for not understanding unspoken social rules and humiliated in front of the class, made to stand on my chair and yelled at. Same if I didn’t grasp a concept quickly enough, or I couldn’t find my voice. I needed help from the teacher aide weekly even though I was smart. These days I understand the things I did that were so “wrong” but it would be approached so differently these days.

With the right early intervention and capacity building supports, I may have learnt social communication and coping skills in a safe and supportive way instead of through humiliation and trauma.

I am in touch with quite a few of my classmates from this time. There are several that ended up with late diagnoses of ADHD, Autism or both, and almost all of them were either the

“gifties” like me, or the “problem kids” at school. They were constantly being sent to the office to get the cane (corporal punishment, either on the hands if you were a girl or the bum if you were a boy). They were constantly being made to sit outside the classroom. Some of the rougher teachers would throw things at them books, dusters etc. I had a teacher one year who would pin certain kids up against the wall by their collars and yell in their faces.

There was plenty of this back in the 80s… when people say that neurodivergent kids just weren’t in schools back then, they were. They were just seen as bad kids, or they were like me, very well behaved yet still struggling.

I was also relentlessly bullied, from year 1 all the way up to the end of year 12, because I was different and the kids could pick it. One of the main reasons for this was because I was so far behind the other children in my social development. For example, in year 7, the other girls were very disdainful of me because all I wanted to do was play on the swings with the year 1s and 2s, and that’s what I did every break time. The rest of the girls were gossiping, sharing glossy magazines etc and I went home and played with my dolls. Throughout my school years I had periods of not being able to speak, once for a couple of years straight.

Things weren’t great at home either. Neurodivergence in my family meant a lot of violence and neglect throughout the years. Burnt out mum, dad walking out. Siblings that had violent, house destroying meltdowns and/or were sexually abusive. A parent who did not prevent me from being abused by other people including outside the home.

By age 9, I had my first diagnosis of depression. At age 9, I tried to cut my wrists and was writing get me off the planet notes. By 16 I was on antidepressants.

I was such a driven young lady, and when I was interested in something, I fixated on it to the point that I it was my everything. By year 12, I had a bright future ahead of me, a future I was excited about, despite how much I was struggling. I had been advised to leave school and take a break by the psychiatrist in year 11, but was so determined that I pushed on regardless.

I was accepted into university, and left home in order to attend. And this is where it all came crumbling down.

At 17, I still had the understanding of the world of a late primary school age child. I was horribly naive and vulnerable. I had already been abused by this point, but there was a lot more to come. Even in my 30s I still struggled to understand why a man would say “I want to buy you lunch” and yet have no intention of actually taking me to lunch. I was extremely literal. I still am to this day, even though I’m able now to see it better.

My Experience

I reached breaking point, and imploded. I became more and more depressed. I could no longer stand to make eye contact with people at all, I can’t explain the feeling, but it felt too unsafe. I hid away in my room at Uni unable to come out. I became socially isolated and unable to participate in ordinary community life. Looking back now, supports focused on social and community participation could have changed the course of my life. I needed help learning how to safely navigate the world, relationships, communication, daily living and connection with other people. Instead I disappeared into isolation and crisis.

I became so unwell and underweight that by 18 I was hospitalised for anorexia. Unfortunately being diagnosed with anorexia and depression and being treated for those, meant that the actual reasons for me being so unwell were never addressed, and hospital also caused a lot more trauma. I got stuck in what I call the anorexia merry go round. Force fed in hospital until stabilised, discharged, lost all the weight and more within a fortnight of discharge, back to hospital. Round and round we go. All the while accumulating more and more trauma, more and more physical illness from the malnutrition, and losing more and more hope. Becoming more tangled and stuck in my mind.

I ended up on an involuntary treatment order both in the hospital and in the community. That meant that if I ran away from hospital or refused to go to hospital, police would force me there. I had no control over what was done to me in hospital and had invasive procedures done without my consent. I ended up with all my money being taken over by the public trustee, which in itself was a nightmare. I didn’t go back to uni because I was almost always in hospital. I bounced between seedy, unsafe boarding houses when out of hospital. I was unwell to the point that I was told many times that I was not expected to ever get better. The hospital no longer restored my weight, they took me up to still very low BMI and tentative medical stability to be discharged. I got to the point where I was put on TPN multiple times, this is considered the last resort for anorexia. I spent many long admissions restrained to my bed by my wrists. Lost so much muscle mass I had to relearn how to walk. Ended up with extremely painful peripheral neuropathy from the malnutrition. And severe osteoporosis by my 30s.

I went through this until I was about 36 years old. A nightmare I could not seem to escape from. In this time I was given so many other mental health diagnoses. Depression. Anxiety. Bipolar. BPD. DID. Etc. I self harmed severely, and attempted to off myself many times, was very close to successful quite a few times.

I could not study or work or do anything of use. When I was out of hospital I was always volunteering somewhere, most of the time charities that helped homeless people. I’ve always been an active volunteer from the age of 14. But that was all I did that was of use to the world throughout those years. Looking back now, those volunteer roles and community connections were some of the only things tethering me to life and the outside world.

Community Participation

Community participation is not frivolous. For some disabled people it is what keeps us alive and connected enough to keep going. I instinctively knew that it was vital for me to do this work in between hospitalisations and it gave me a sense of belonging and contribution in a time where I felt overwhelmingly a useless burden who should not exist. Many people don’t have the ability to do this without support to get there or be there.

In my mid 30s I got a computer and the internet and started doing some research and realised that I did not have any chance of beating the anorexia without restoring my body weight. I realised that in the long term, TPN can lead to organ failure. I realised the medical toll everything was having on my body and realised that I was actively dying.

I asked the hospital to please help me gain more weight the next time I was back. This additional weight helped kick start my brain. I started studying, went back to uni etc. It allowed me to maintain my weight and start fighting to get better.

However I was still unwell, and I also met my ex partner and ended up in DV with a child. But that’s a whole other story. People with disabilities are far more susceptible to abuse and domestic violence than the rest of the population, and access to regular supports lowers this risk greatly by reducing our dependence on other people in our family or close circle.

These days, I’m a single mum of 2 beautiful children. One diagnosed AuDHD, like me. One too young to know yet but already obviously a giftie. I am on the DSP, and live in housing. I sometimes am able to work but my limit is 5 hours a week and I’ve ended up getting more unwell sometimes from working. My kids have challenges enough that they also make it very difficult to work. I look fine to outsiders but you cannot see the physical and medical remnants of the years of malnutrition, or the daily struggle, or the pain from unaddressed hypermobility and severe osteoporosis or the myriad other battles going on. I do my best to have my kids grow up in a loving, safe environment and to get the supports they need to ensure their lives go better than mine did.

I need regular help from NDIS funded supports to do that, and to also help me maintain my health enough to stay out of hospital. The supports around social and community participation and capacity building are especially important for me. They help me maintain outines, attend appointments, parent safely, engage with the community, manage daily life, build skills, and avoid the severe isolation that has historically been so dangerous for me. Without those supports, my world becomes smaller very quickly and my mental and physical health deteriorate. It has taken a lot of hard work to get to where I am today, stable, and a good enough mum to my children.

I am one of those people about whom there are most likely people saying “why is she in housing, why is she on centrelink, why is she on the NDIS, she must be scamming and

bludging” but the reality is very different.

Over the years I have cost the taxpayer millions of dollars in hospitalisations, community management, support work for 15 years before NDIS existed, therapies etc. I contributed almost nothing to the world, and had a life of intense, almost constant suffering. And the heartbreaking thing is that so much of it could have been avoided or at least alleviated with the correct diagnosis and early interventions and then appropriate treatment and understanding during my childhood.

Capacity building supports and support for social and community participation are exactly the kinds of things that may have prevented decades of hospitalisations, trauma and dependency. They help people build sustainable lives before they reach crisis point.

And I could have had a life where I did get to make something of myself. And sadly, my sort of story is far from rare. And I’ve only very barely touched on it in this post, trying to maintain some anonymity and aware that even this much is probably too much.

One of the scariest things I’ve learnt over the years, is that there are so many women out there with similar stories to mine. I met many other people in hospital over those years for similar reasons and these days most of them are either themselves late diagnosed neurodivergent and/or have neurodivergent children. The path my life took is sadly quite common for undiagnosed, neurodivergent women.

When you think that most of the children on the NDIS shouldn’t be on it, it’s a waste of money, think of people like me. Think of the long term cost, not just to the taxpayer but the cost in real lives. When you think “there’s too many people being diagnosed with autism and/ or ADHD” remember that neurodivergence is HIGHLY heritable, entire families often are neurodivergent, and that up until recently it wasn’t recognised that women could be autistic or we were measured by criteria modeled on boys, whereas it can show up very differently. It was only in recent years that the criteria changed to mean that autism and ADHD were no longer exclusive, you could in fact have both. And that most of us later diagnosed people grew up in a time when not only was there far less recognition and understanding, but when attitudes and stigmas meant people actively avoided getting help for any sort of mental issue and often concealed or institutionalised family members who did obviously have issues.

Cuts to supports around social and community participation and capacity building will not save money in the long run for people like me. They will simply shift the cost elsewhere, into hospitals, homelessness services, child protection systems, psychiatric wards, crisis teams and emergency departments. More importantly, they will increase human suffering. These supports are often the very things that allow disabled people to remain connected, stable, safe and alive in the community.

Thank you for reading this.