Centrelink gave me a hangover

As I type, I feel like last night I had one too many red wines. But that isn’t what happened. I didn’t have anything to drink last night, or the night before that. I was in bed before 10, too. And I didn’t wake up with a cold or a bug of any type. What happened to me was Centrelink, and Employment Plus, and getting squeezed and poked by a system (or is it systems?) not designed for the likes of someone like me.

Regular readers (there are a few of you now – thank you!) will know that in January 2023 I had to resign from my job because of Autistic burnout after discovering, a few months before that, that I am indeed Autistic. Because I still needed (need!) some sort of income, in January I, reluctantly, registered for Centrelink’s JobSeeker payment, with a medical certificate from my GP that stated I am currently incapable of working because of Autistic burnout, anxiety, depression, and stress.

After filling in the immense online forms and meeting a series of rigorous requirements, Centrelink approved my JobSeeker application and medical exemption, with the advice that I would not receive any benefits until 8 May because (according to Centrelink, not us) my wife and I have too many assets.

So, between January and 15 May, when I received my first payment (in the grand sum of $228.25), I was without an income. Stressful yes, but we’re frugal (some might say ‘tight’) with our money, so we’ve been able to make the best of it.

The penny didn’t even quiver, let alone drop

At the end of April, I received a message to my myGov inbox that my Centrelink ‘mutual obligation’ exemption was expiring – something that would occur one week before I was due to receive that first (and so far only) payment.

At the time, I did note it, but then didn’t think any more about it. As a way to help process the shock of my Autism diagnosis, I had started writing this blog, preparations for my son’s 30th birthday were in full swing, and I also had to follow up on a separate application to the NDIS (more on that – including some valuable advice and tips when applying – in the coming weeks).

Even after learning that I would have to attend an appointment with The Salvation Army Employment Plus to enter into a ‘Job Plan’ and start looking for jobs I’m currently not capable of doing, or risk having my payments suspended, or cut off completely, it still didn’t occur to me what it all meant.

Then, like a lightning bolt through my chest, the day before that very appointment, Mother’s Day in fact (not that the occasion itself is particularly relevant, but it was after festivities had died down, and things had gone quiet, that the lighting struck), I realised that my medical exemption had expired and that I hadn’t taken any steps to apply for an extension.

D-Day (or should that be S-Day, for s*it?)

The next day, Monday 15 May, turned out to be one of the worst days I can remember. It began at 8:00am, with a call to my doctor, or the clinic Manager at least, to follow up on an email I had sent earlier that morning requesting an updated medical certificate. Helpful as always (no cynicism intended!), she explained that she would pass on my request to the doctor, then scheduled a telehealth appointment for 11.

While I waited for the doctor’s call, I embarked on what I now know to be the impossible task of calling The Salvation Army Employment Plus to cancel the ‘job-plan’ appointment scheduled for 1:30 that afternoon.

And there was another problem. Whether it was the stress of my predicament, the ticking clock, the cold morning, or something else not known to me, the hold music was rapidly driving me mad. (I now view it as my very own Clockwork Orange horror show.) I tried everything to ease its impact: turning the speaker down on my phone, turning the speaker off completely and turning the volume up, placing the phone on the other side of the room. But none of it did anything to reduce the rage provoked by that music.

To make matters worse, every 30 seconds a woman interrupted the music to announce to the hard of comprehending that: “We are experiencing a high volume of calls…”

It got so bad that while still on hold, I added a complaint to the relevant section on the Employment Plus website about how “outrageous” it was to put anyone, let alone an Autistic person with sensory processing difficulties, through this and how in 2023 there are “many other, far better ways” to handle large volumes of calls.

By the time my call was answered, more than 45 minutes later, I was so dysregulated from sensory overload that I was unable to communicate in my usual calm manner. Instead, I was barely coherent, unable to find and provide my Centrelink reference number, and more interested in having the customer service representative listen to my complaint about a system not at all set up for people with a disability, than anything else.

To her credit, the customer service rep did her best to try and establish the actual reason for my call, but hung up when she realised she wasn’t getting anywhere.

During that call, which ended just after 9:30, I had started at number 22 in the queue. By the time I had composed myself by taking a long shower and dialled the number to try again, the flat-toned recorded voice told me my position was number 63.

63! Are you kidding? It was already after 10 o’clock and, by my estimations, I had at least – at least – two more hours ahead of me on the end of the phone. Two more hours of hold music. Two more hours hearing about how they “are experiencing a high volume of calls”.

No. No! This will not do!

I hung up, threw off my jumper because I was now boiling, and went in search of other options. Surely there was a disability support line, or a way Centrelink themselves could help me with the simple task of cancelling an appointment I no longer needed.

After more than an hour of searching online and calling other numbers that themselves were beset by incessant chimes and people with nothing better to do than hang on the end of the line, I lurched back to the Employment Plus line, only to find myself at lucky number 65.

Some progress – and then not…

At 11:46, after a brief telehealth appointment with my GP, I had the medical certificate in my inbox. However, I still did not need (or want) the job plan appointment, but had no way of cancelling it. No online options existed, and the phone lines – every phone line – was besieged by callers just like myself.

My wife, having heard several bursts of activity beneath her, reached out to me via WhatsApp. She has no idea how much that helped me – even if, because I was now in complete Autistic meltdown, I was incapable of expressing it.

From a 2023 study by Lewis and Stevens: [Quoted as it appears online] “During a meltdown, we found that most autistics described feeling overwhelmed by information, senses, and social and emotional stress. They often felt extreme emotions, such as anger, sadness, and fear, and had trouble with thinking and memory during the meltdown.

The account by Lewis and Stevens perfectly describes my state at that time. I could not stop my (destructive) momentum. I could not control myself. Reason, like Elvis, had well and truly left the building.

My wife, compassionate, loving person that she is, did what she could to help me: online searches, suggestions on whom I could call, but everything led to more dead ends. Employment Plus, it seemed all too clearly now, was my only option, and I felt I had blown my chance with them earlier thanks to the meltdown from stress and sensory overload.

It was now almost one o’clock. I raced upstairs and changed into something that resembled ‘upstanding citizen’, flew back down, and left my wife, ashen faced, as I backed the car out of the garage.

Fortunately, The Salvation Army Employment Plus office was less than 20 minutes’ drive from my house. ‘Office’ though is perhaps being generous. It was a hall of sorts, small, rundown, filled with people…congregating? dancing? I couldn’t really tell. My eyes couldn’t fix on anything longer than a few seconds and my brain didn’t seem to be able to form any coherent thoughts.

The view from the street of a brick hall next to a public park
The Salvation Army Employment Plus ‘office’ is a single room at the front of this brick hall (Photo taken from a Google maps screenshot – after the event)

Two staff members were standing beneath a tree at the front of the hall smoking cigarettes, and when they saw me, looking as if I had just woken from a coma, staggering about, they extinguished their durries and approached.

I was indeed in the right place, they told me, and escorted me to a small office at the front of the hall, checked my identification, and listened patiently as I recounted the story written above.

I’d like to say they met me with understanding, with empathy for the fact that I did indeed have a medical certificate, and had tried, for more than four hours, to cancel the appointment I now found myself squirming in. But instead they proceeded to do things by the book. That included telling me that despite me having secured a medical certificate, and uploading it to the Centrelink portal, it hadn’t been ‘coded’ so there was nothing they could do but proceed with the job plan as scheduled.

I would also like to be able to report that I took this news with the good graces of the Buddhist Monk my haircut alludes to, but, sadly, it was something more reminiscent of the phone call that had much earlier been cut short.

Despite telling the Salvation Army Employment Plus officers that I’m Autistic, in burnout, and dysregulated, they repeatedly asked me to calm down, to stop being so condescending, and, finally, to leave the office and go home. They would reschedule the appointment for a later date, they told me – I wasn’t yet off the Salvation Army’s hook.

When I got home I felt even more desperate. I tried again to call Centrelink, but this time the phone lines were so busy that each time I called a recorded message advised that I would be disconnected, and then, as promised, the line did indeed go dead.

I hadn’t eaten since breakfast. I had a raging headache, a raging mouth, and a raging mind. At four o’clock, I ate a bowl of soup. At six, two pieces of toast. I didn’t prepare a meal for my wife and myself as I usually would have, and by nine o’clock I was already looking for bed.

My meltdown had left me exhausted. I slept only in fits and starts and woke up on Tuesday feeling like I’d been drinking half the night. Then, with two phone calls, I fixed everything.

Do as I say, not as I did

If you ever find yourself unemployed, because you’re unwell with Autistic burnout or anything long lasting, and you’ve applied to Centrelink for JobSeeker or similar, and have been accepted, follow these steps, in this order, to ensure you don’t experience the sorts of issues I did. And, whatever you do, don’t call any of these organisations on a Monday, especially the Monday they make payments, not unless you want to listen to a whole lot of hold music.

  • Visit your GP and have them complete a Centrelink Medical Certificate form (SU415). Better still, email it to your local clinic and have your GP complete it for you and email it back. You can also ask your GP to complete their own medical certificate so that they can include more details on your condition than the SU415 allows.
  • Sign in to your Services Australia account (who deliver Centrelink payments and services on behalf of the Federal Government – just that statement alone tells you how convoluted the system is) and upload your medical certificate(s). There are steps on their website about how to do this.
  • Now, here’s the important part. The part that could have saved me an awful lot of trouble on Monday. Call Centrelink immediately – not the Salvos Employment Plus line – and stay on hold no matter how long it takes (it can take forever. 1-2 hours isn’t uncommon). When you get through, ask the person you speak to to: ‘code your medical certificate’. That’s the golden goose: “Please code my medical certificate for me. Please…”

The process of ‘coding’ will add your medicate certificate to Centrelink’s system and stop everything else. That’s right. It stops all other appointments and requirements that might be in the system for you. Importantly, it means you will be exempt from meeting ‘mutual obligations’. That’s the vital component that drives everything when it comes to reporting and looking for work. And, if like me, you’re genuinely unwell, you shouldn’t have to meet mutual obligation, or jump through any hoops, or deal with anything else that could potentially set back your recovery. The goal here is to recover from your latest bout of Autistic burnout (or similar) – nothing else.

The coding process for me took around 10 minutes while the customer service representative did what she had to do on her end. And I didn’t even have to wait to get through this time. I called on a Tuesday morning at 8:00am, when Centrelink opens, and my call was answered immediately. I nearly fell of my chair I was so surprised.

  • After this, and only because I already had another appointment scheduled for the following week with The Salvation Army’s Employment Plus service (yes, they rescheduled it that quickly), I called the Employment Plus ‘hotline’ to make sure everything had actually been applied. Now, the customer service representative at Centrelink said I didn’t have to worry about this, that it would all happen in due course. But, given the day I’d had on Monday, I wasn’t prepared to leave anything to chance.

After 30 minutes on hold (a mere drop after the previous day’s efforts), I spoke to a customer service representative from the Employment Plus national centre who was able to confirm that my medical exemption was indeed approved and that she would therefore cancel the meeting scheduled for the following week.

I can now breathe easily again – at least for three months

The upshot of all this is that I am now exempt from having to meet mutual obligation, or attend any meetings, or prove that I’m unwell to anyone for the next three months.

I would much rather have not had to do any of this. I would much rather have kept the job that I had and fulfilled my goal of working six more years and retiring outright in 2028.

But when I woke up one January morning in 2022, I knew something wasn’t right, I suspected my plans were about to change, and, for me at least, life has become a lot more about getting well than it is about the job that I do (or don’t do), or how much money I earn, or what happens in the next 5 or 10 years.

It’s about taking each hour and each day as it comes because, I now realise, I have no way of predicting what the future holds.

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  1. Hello Glenn,

    I believe I have shared your experiences with Centrelink and job network people meltdowns, though especially via the automated receptionist that never understands what I say and frequently hangs up or will say “I think you said….” which will bear no resemblance to what I’ve actually articulated and will send me to a completely redundant context menu with no option to redirect the query. And sometimes, a selection will prompt a voice recording that recommends visiting the Services Australia website and then just hangs up.

    Sometimes I have had these terrible ‘conversations’ in the car and being in a safe and somewhat sealed environment, while on hold will shriek and swear horribly until hoarse before hanging up in despair, needing at least a couple of days before trying again. Like you, I’ve also been more concerned about telling the person who answers how badly their system operates and how distressing this is.

    I did at one point try their voice print technology but once recorded, the system then refused to accept my voice, leaving me a despairing weeping mess for an afternoon. Eventually I had the recording removed, will never ever try it again, and find the insistence of the receptionist instructing me to say “In Australia, my voice print identifies me” utterly repellent.

    At one point, just discussing Centrelink with someone from an advocacy organisation who I believe has left me for dead, I experienced such extraordinary palpitations that I ended the call quickly and drove myself to the local emergency department, fearing the worst then being assured the problem was ‘just anxiety’ – I usually have constantly low blood pressure too but think it might be changing.

    To read your similar story has helped me to recontextualise mine in more affirming ways, thank you. It would be great to perhaps compile a number of experiences and present them to Centrelink or the minister responsible for some kind of change.

    Sometimes I think that whoever developed the Centrelink receptionist is using all benefit recipients as guinea pigs to re-develop the technology, but even a simple press 1 for this and 2 for that is more efficient and makes more sense than what exists at present.

    • Hi Esmerelda, thanks for sharing your own experiences about Centrelink. It does indeed sound like I am not alone! And I’m sure there are plenty of other tales like ours as well. I feel your pain about the ‘automated receptionist’. I too have felt her wrath more than once and had the misfortune of her hanging up on me rather than placing my call. I love the idea of trying to instigate change, much in the same way as is currently being done with the NDIS. Perhaps, in time (once I am through this period of burnout), it is a project I will consider turning my mind to. Take care, Glenn.

      • Thank you Glenn, perhaps I might be able to give you a hand once I’ve swept up my own burnt ashes.
        I did read an article the other day about an Autistic mother who has developed some technology for NDIS participants and providers to help streamline the process and make it easier for everyone but especially those traumatised by having to repeat their stories ad nauseum to each new provider. If if I can find it will post the link, it’s inspirational in terms of instigating change…
        …here it is but it’s timing out at the moment https://womensagenda.com.au/latest/i-have-four-autistic-children-and-i-was-just-diagnosed-as-being-autistic-at-32-heres-what-ive-learnt/ …hopefully it will work again shortly

        • Thanks for sharing that article, Esmerelda. I’ll definitely give it a read. Your timing is uncanny as well – next week I’ll be posting a story about my own experience with NDIS. I’ve been constantly surprised! Thanks again.

  2. Can certainly relate to the demeaning conversations – having to expose your inner kept life struggles to Centre Link – although 30 years ago it had to be done face to face. Today, communicating by phone is so frustrating, even for those of us who are normally very patient. Well done for sharing your experience and offering advice to others in the same situation. Another life experience to add to your list of “conquered”! Enjoyed reading. Written so well, I could FEEL your struggles. 🤗

    • Thanks Janice. It was more than challenging experiencing it – and then reliving it when writing was the classic double-edged sword: cathartic AND traumatising. Hopefully, my account will help others though.

  3. I can’t believe how they treated you, Glenn, even after you disclosed your disability. Thanks for sharing and being so honest with your experiences

    • Thanks Sarah. I have to admit I was surprised throughout the day at how nothing I said to anyone seemed be get through. It was an isolating experience – so your comments are VERY welcome. 🙂

  4. Such a painful experience, Glenn, and it really should not be so hard to navigate the system when there is so much pain.
    I can relate.
    I’m currently experiencing my first time overseas since my diagnosis, and the process of understanding autism in my life continues, in leaps and bounds.
    Thanks for sharing. Take care.

    • That’s great that you’ve been able to venture overseas, Linda. I hope to be able to travel in the next year or two as well. Hope you have a nice time. 😊

  5. Another great post Glenn; how maddening. I felt my blood pressure return to normal when I read your happy ending.

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