Submission

My submission may differ from others in that I have not been able to access the NDIS. This is because the process is too complex and overwhelming for a person in my situation. My submission, therefore, is also perhaps complex and overwhelming. I apologise for this and hope that I have been able to clearly articulate the main problems and, where I can, suggest solutions. This submission relates more to terms of reference b and c.

I am Autistic.

A bit more about me and my situation:

e. I have a recent formal ‘diagnosis’ of Autism (Level 1) but have suspected for some years that I am Autistic. Unfortunately, I have been unable to access informed support in the area in which I live and unable to afford it otherwise. Consequently, I have been unable to access appropriately informed medical and psychological care – critical for accessing both the NDIS and the DSP which I mention in what follows.

e. I have spent my life trying to cope, trying to work, and frequently failing. I am a qualified teacher and have worked as a sessional lecturer and university tutor as well as a cleaner and census collector – al l in short-term capacities. I have not held a full-time job for more than a two-year period. For much of my adult life, I have lived below or close to the poverty line. I have a $45K HECS and student loan debt.

e. For the past five years, I have lived in damp and mouldy buildings. Prior to that, I rented a single bedroom in a house in Sydney. I lived in this room as well as worked from it with my cat who was my closest and constant companion but who is now dead. I was not able to afford adequate veterinary care for him during his final months, which, over 2 years later, is still a source of distress.

e. For several years I have been ‘self-employed’ as a graphic and web designer. I worked for an organisation for about 10 years, more consistently during the latter part of that period and quit around April this year as I could no longer cope. For the last few years, I was working fewer than 8 hours a week, but these hours were spread across days as I was often asked to perform small tasks during the course of a day and also was frequently unable to work, so I would have to stop and return at a later time. This meant that I could never have a clear mind because the work was always a priority and filled my head, so I couldn’t do anything else. Without the work, I would not have been able to survive, especially not in terms of paying rent. In April, I was also dealing with a significant mould outbreak which needed to be addressed and could not cope with both work and dealing with this – it took months to clean and is still not complete.

More detailed information:

e. In 2018, I sought psychological support because I was just not coping ‘at work’. At some point along the way, I also expressed the belief that I was Autistic, from there things went downhill rapidly. I tried to seek a formal ‘diagnosis’ but unfortunately, there were no reasonably local people with the relevant expertise to do this for a woman over 50. As a consequence, I believe I was discriminated against, experienced constant invalidation and sometimes had my health concerns dismissed – by well-meaning people. The focus was constantly on my deficits and also childhood trauma which I had experienced and believed that I had ‘dealt with’ during therapy which I sought from an early age (18) and from then sought consistently though wasn’t always able to afford.

About Autism

All Autistic people, regardless of ‘functional’ levels have different ways of processing information – whether that be cognitive or sensory. Autistic people take longer to complete tasks and evaluate information – this doesn’t mean that we produce inferior work, more so that this style of processing does not fit with standard measures of productivity.

I would add that differences in neurology are not deficits that should or can be fixed – they are hard wired.

Similarly, many Autistic people operate in what is called a monotropic way, a theory developed by Drs Dinah Murray, Wenn Lawson and Mike Lesser close to 20 years ago (I believe) – the need to focus on one thing at a time. Too many things become cognitively overwhelming and can lead to what are called meltdowns, shutdowns and also Autistic burnout.

It is commonly thought that Autistic people are unable to make eye contact; however, it is highly likely that this preference for not making eye contact is driven by a monotropic brain – focusing on only one thing at a time. So, if an Autistic person is listening to you but not looking at you, they are not being rude but are just focusing on what you are saying. Having to make eye contact at the same time is for many too demanding though not impossible for others. Some Autistic people describe having to make eye contact as physically painful.

Sensory sensitivities mean that sounds, lights, smells and so on can become overwhelming and for some people cause physical pain, these can also lead to shutdowns, meltdowns and potentially, Autistic burnout.

Autistic people communicate differently to ‘Neurotypical’ / ‘normal’ people. Contrary to popular belief, Autistic people do not lack empathy. It is believed that given differences in communication styles, that Neurotypical people lack empathy for Autistic communication and vice versa. This is called the ‘Double Empathy Problem’ a theory developed during the 1990s by researcher Dr Damien Milton.

Autistic people ‘mask’. This is the process of hiding Autistic traits, basically ‘pretending to be normal’, s o enduring the overwhelming in order to appear to ‘function’ in the ways that society demands. This is exhausting and in the longer term ultimately damaging.

As I’m sure you are aware, Autotic people have reduced life expectancies, often live below the poverty line and are either un or under-employed regardless of skills and qualifications.

or sleep. None of this would be acceptable in a conventional workplace – it is par for the course in mine only because I work from home, ostensibly for myself. I am my only witness.
As well as these stressors, if your inability to cope is regarded as a personal deficit rather than the result of too many demands, and if you are continually invalidated when trying to assert that you are Autistic, then this becomes a significant mental health issue leading to prolonged burnout.
On top of this, add the development of an autoimmune eye disease (that caused 2 vitreous detachments), which without treatment can lead to blindness. My eyes are still filled with debris from the vitreous detachments and this debris causes me significant difficulty and distress. The solution is expensive surgery which I can in no way afford. I also experience a host of other physical maladies including eye pain, bodily aches and pains, a constant headache, debilitating exhaustion, debugging abdominal issues, and intermittent dizziness to mention a few.
I am currently unable to afford to access an ophthalmologist with expertise in autoimmune eye disorders, as they all live too far away. I was referred for a retinal scan in Sydney but there is no way I can access this. I can’t afford the fuel to get there but also, my car, due quite possibly to damp exacerbated by weather events in the area I live in, has become unreliable. I no longer have comprehensive insurance for it, only third party but will have to give this up when it comes time for the policy to renew in a month or so.
Like my car, I am no longer functioning very well. Despite my best efforts at maintenance, the toll of what I have endured during the past decade or so especially has taken its toll on my ability to cope and my ability to conform to ‘normal’ if any standards of productivity.
I’ve been working from home almost exclusively for well over a decade. I have also worked in exploitative environments and experienced workplace bullying. I have been through a debacle of a workers compensation claim which failed after the ‘employer’ lied, and I had been unable to afford medical reports. This all happened in 2011, the NSW state government changed the workers’ compensation laws retrospectively the following year, and their own WorkCover workplace was investigated for bullying and so on not long after that. I wanted to appeal but could not face the process. I made well-researched plans to end my life during this period.
The worst was yet to come though, I would describe 2019 as the worst year of my life. I experienced a number of traumatic events including the development of the sight threatening eye disease – initially not diagnosed until I’d sought a third opinion, inappropriate psychological assessments, deaths, and dealing with Centrelink. Suicide was not an option as having experienced the fallout of another person’s appalling tragedy the previous year, I did not wish to inflict that on anyone else.
While the DSP I’d applied for was rejected later in this year, I’d made an earlier claim that I’d been unable to complete as I was too stressed and distressed, so it was cancelled. After submitting the claim I did complete – it was all down to me to do everything – I nearly collapsed several times the following day – which is not something I ordinarily experience.
As a consequence of everything, as well as not being able to cope with work, I’ve been unable to maintain my skills and stay up to date. So, I have lost that, as well as being unable to complete work I’ve done easily in the past. I have become less functional, less ‘employable’ – even by myself.
I’ve also lost health and condition. Where for over 15 years, I had been assiduously ensuring that I met my nutritional needs (even on a thoroughly limited budget), and exercise needs (regular walking, a yoga class and at times a gym membership), for a little over 2 years, I have been unable to eercise regularly given chronic pain and exhaustion and disruptive precarity. This is really upsetting

Personal Statement

because according to most research, regular exercise and a healthy diet are key to ageing well and as I approach 60, I do not in any way wish to be infirm or dependent on outside care because my physical health is compromised.

In terms of mental health, I had maintained a meditation practice for many years and also used mindfulness and CBT, as well as seeking professional support and taking self-improvement courses. I have made a concerted effort over many decades to ‘improve’ myself, being for much of that time of the opinion that I was ‘normal’ (Neurotypical) but damaged.

After quitting work in April this year, I have re-implemented meditation / relaxation of sorts and have also been trying to incorporate something meaningful and creative into every day. But I have also more recently had to take on other work and this has not had a good impact on my mental health and ability to function at all.

I have needed to take on additional work, because my main means of support is the Jobseeker allowance and on this, I can barely afford rent. I have a DES provider but have been exempt from mutual obligations for some years, so I never see or hear from them, which to an extent is a relief. I have spoken with a Disability Advocate and would most likely meet the DSP criteria across 5 impairment tables and to access this option, I need to ask the DES provider to sign off on provision of services to me - as well as procure supporting evidentiary reports myself. This was several months ago. I have not had the capacity to deal with this since. I’ve tried to explain it to the GP I see at present, but it has been difficult, and most visits become extended on alternate issues, so the DSP is never addressed.

Now, faced with increased costs across the board (including rent), I am unable to afford to eat a consistently healthy diet, sometimes I have very little food. I eat food past its use-by date, which is apparently not such a bad thing, but when the food is off – like rancid butter, it doesn’t taste the best.

In less than 2 months, my rent will increase to $290 per week. Share or crisis accommodation is not an alternative, neither is a caravan – a caravan is actually more expensive in many areas. My home is prone to mould and I have had to throw a lot of things away that I would rather have kept and should have had the option of selling. At the moment, I have been unable to use the largest room in the building (which is technically a flat), because of damp and mould. My bedroom has also been subject to damp and mould – all of my clothes have been mouldy and I believe my mattress is also mouldy. I have been unable to afford to clean or replace my blankets and bedding, those clothes I have not yet washed or that should be drycleaned, or the curtains in the building. I am still waiting for the outcome of a building inspection undertaken as part of the NSW government’s ‘Back Home’ grants. My shoes are kept in the kitchen because they will mould in my bedroom where I would prefer them to be. Having order and predictability is important to everyone, especially Autistic people.

Living in chaos and disarray is quite upsetting, more so with added precarity. Having a home is something that’s important to me, but I can’t have one – I can’t afford the rent, will never be able to buy one, and my current residence, while in a lovely location and on the surface looking like the perfect place, is damp, mouldy, extremely cold in winter, extremely hot in summer, and poorly ventilated. When I first moved in, I had to supply my own flyscreens for multiple windows. Black coloured mould has appeared on almost every ceiling in the building. The water from the taps is not safe to drink. Some of the walls are only a single sheet of fibro thick and in some cases the fibro is actually a composite cardboard.

Flood Grant Assistance

I received a Federal Government flood grant and spent this on an air purifier to filter mould spores in my bedroom especially, and, because on humid and rainy days, opening the doors and windows is risky because the damp air fills the building and encourages mould growth, having something to circulate the air is essential. I’ve also purchased, gap fillers, an additional fan to circulate air, many cleaning products, and multiple plastic tubs to replace all the cardboard boxes I had packed my things in after the larger room became unusable.

While I’ve been grateful to be able to access avenues of support here and there, realistically, it mostly amounts to temporary stopgap measures – temporary respites.

Perhaps with more practical assistance or being in a more functional state, I might have been able to make the room more useable, but it would appear that the slab has become damp, floorcoverings are lifting. On a day like today where it has been raining a lot and the bridges will soon go under, the stench of mould and decaying vegetation permeates this room when the air has been still. I have to keep the door to it shut. I have nowhere else to live.

I also can’t afford to move anyway as after rent and bills, I have approximately $168 per fortnight to cover everything else, but this doesn’t mean that I have access to $168 every fortnight as I have to work on what is actually available not theoretically. So, this fortnight, for example, after bills and rent, I had $139 and was unable to afford everything on my very short list. I write and rewrite shopping lists constantly. I have to check prices online and make decisions on that. I cannot afford to take advantage of specials and ‘stock up’. Next fortnight, I will have a little more as the rate has increased marginally, but as an example on the old rate, I would have $109.18 for the fortnight to cover all other costs – food, medicine, fuel etc, after rent and bills.

Until tomorrow, I will have had a website of photographic work – something that has value to me as it represents an achievement. It’s not the best photography around and not a great website, but it’s mine. I can’t afford the web hosting costs – approximately $70 pa, so now I can’t afford an online presence that might reflect my abilities rather than perceived deficits. I had a graphic and web design website I had to abandon for the same reason (in 2019). I had a business name registered from 2017, but again lost this when I couldn’t afford the renewal fees. I also had a domain name registered for that business name but lost that due to cost – about $24pa which I didn’t have at the time renewal was due. This year, the ATO cancelled my ABN. As well as tertiary qualifications, I have a Certificate IV in Small Business Management.

In November, my rent will increase to $290 per week. I will also need to start paying for software that I use for work (when I can). I was given a 3-month respite and ongoing discount by the company when I sought to cancel my subscription which will end then. This will add $43.99 per month to my expenses, so along with the extra $20 per week rent, what’s left will dwindle even more. I’m also paying off a NILS loan I was fortunate to secure, to pay for nearly $1000 worth of mechanical repairs to my car. Unfortunately, it still needs work – approximately $400 worth to replace (another) sensor that may have been affected by damp.

I need a car; I live in a remote area. I have twice had to drive myself to the emergency department of the local hospital during the past 4 or 5 months. Once for uncomfortable and frequent palpitations which were reduced following a magnesium drip, and the other for what I thought was a retinal detachment which was first diagnosed as a central retinal vein occlusion, and then phlebitis due to the eye condition I have. It was extremely stressful, and I thought my vision was permanently destroyed.

About 6 weeks ago, I ran out of contact lenses for one eye – I have 2 different prescriptions.
I need to wear contact lenses as glasses cause intolerable facial pain – this has been a problem for over a decade, and I have tried multiple alternate frames. The pain worsens with stress. I wear a piece of cottonwool under the bridge of my glasses while I am at my computer, as I am now, and if it was a sunny day, I’d also be wearing a hat to reduce the glare – these are two of my DIY supports. One of the others is to put my fingers in my ears when noise becomes too much to bear, or to just go and lie down with a cloth over my eyes to block out the light as well – this includes the noise of my laptop fan.

I’ve been alternating between wearing glasses (which are nearly 3 years old) and some old lenses which are the wrong prescription, but I have no choice. I need approximately $70 to pay for a new box of lenses but don’t have it. I have about 8 of the others left.

I began an application for a DSP again in April this year, but it was cancelled as I did not complete it within the required time. In the past, I’ve not sought to make these claims on the basis of being Autistic. To my mind, the problem has been stress-related, y my capacity to work has been severely impacted by stress. I submitted psychological reports that I was unhappy with because they contained errors of fact and context - on the advice of a GP I was seeing at the time who said that submitting them would make it look as if I “was at least trying”. At the time I just did it and respected their judgment. This same GP declared that they wanted to end the therapeutic relationship several months later and claimed that I “would be happy when society provided me with a house and a purpose-built studio”, something I found very upsetting. This was just before Christmas of that year.

I was unable to find and see another GP for about 3 months (I think), who then commented on my use of eye contact and claimed that everyone was a little bit Autistic. Their appointments were 6-8 weeks apart, I sought an alternate GP. I’d been advised by the practice receptionist where I went next that the GP who had availability was able to deal with complex cases. It turned out they were an intern and could not. I was recommended another GP some 50 kilometres away who charged $400 for the first consultation and approximately $200 after that. Another GP in the same practice agreed to take me on as a new patient and while I believe this GP has good intentions – as they all do, knowledge about Autism is lacking to a degree and some recommendations are quite inappropriate. If I was able to access a GP with a good understanding of Autism, and Autistic burnout especially, it would be so much easier and less costly, both for me and the Medicare system. And I might actually be able to recover.

Endless blood tests and specialist referrals have gone nowhere, none identifies a cause for my symptoms beyond the eye condition. Nobody seems to consider stress and overload – let alone Autistic burnout, and nobody is Autistically informed. I see a psychologist on a mental healthcare plan, but appointments are frequently a month or more apart (sometimes less), and the sessions mostly consist of me off-loading what I’ve been through. While the psychologist is well-meaning and generous with their time, realistically, access to a psychologist or perhaps a social worker who is Autistically informed would make more sense.

Despite a formal diagnosis, perhaps because of my functional capacity (Level 1), I feel I’m regarded by ‘the system’ as if the issues I face can be surmounted by more and harder work on my part, to overcome my Autism (and all my deficits), rather than find the best way to exist and function as myself, working with my strengths and within my limitations.

Having learned more about Autism since formal ‘diagnosis’,

I understand that a lot of the stress I have experienced is as a direct result of being Autistic and trying to function in a Neurotypical capacity, though I believe that anyone going through what I have would be similarly debilitated – whether or not my perspective on this correlates with most people’s is something I don’t know.

I have started another application for a DSP, but I need reports for this and I cannot afford to pay for them, or even to see a relevant specialist for an opinion. If the GP I see can no longer afford to bulkbill, I will be unable to afford to see a GP. Similarly, the psychologist I see bulkbills, but I cannot afford to pay for them to write a report. Ideally, I would have assistance to make this application.

If I am to survive beyond my life expectancy of 58, according to some sources, ideally, I would be able to access a DSP, the NDIS, and via that a social worker with Autistic credentials - at $100-190 per hour, this is impossible for me at the moment. Similarly, accessing an Autistically informed GP would have benefits - or even the provision of formal training to all GPs on Autistic matters.

I would very much like to be able to find a way to use my strengths and work in productive ways suited to my neurology, rather than be driven to despair to the point of contemplating suicide (I have no plans) and having to continually focus on my deficits while at the same time being excluded from any semblance of a normal or remotely comfortable life, and not being functional in most important aspects – so not being able to attend to housework or garden maintenance on a timely and regular basis, not being able to deal with the accumulation of mould and damp, not organising things like tax returns, skin checks, dental checks – before my extras only health insurance policy must be cancelled (my general health insurance I had to cancel several years ago), not having time to relax, not being able to make plans for the future, not being able to plan and eat regular, healthy meals, not being able to schedule regular exercise and then not being able to exercise when exhausted, not being able to schedule time for creative work, social interaction, time for study – skills updating and so on, reading books I really want to. Basically, I can’t afford to do anything but deteriorate at varying degrees.

This morning I had to update my computer and the screen that came up following that was of a beautiful lagoon. Momentarily, I was transported to a time where life was easier, paddling in a lagoon, relaxing, feeling ok. I was reminded of what holidays are like and reminded that the way things are, I will never experience that again, and not the physical sense of being in a lagoon, but the weightlessness of no worries, of not having a head full of outstanding obligations, impossible tasks, terrible frustration, painful invalidation, and horrible thoughts about the future.

Last year and earlier this year, I was able to drive to the beach for a walk every now and then, I tried to do this weekly if not at least fortnightly. I haven’t been for over 6 months, I can’t afford the fuel and while everyone else will be stocking up on fuel before next weeks excise change, I won’t, I have less than $10 to last me for another week, so I’ll just be staying at home, out of sight and out of (my) mind.

References

Thank you for your time, please make a difference.

No machine-readable text was extracted from this page.