I’m a 28 year old recently diagnosed autistic woman with anxiety, depression, and PTSD. My partner and I have been together for over 7 years in an open relationship. We both practise BDSM, but I’m the only one involved in Sydney’s BDSM scene. My partner and I are parents to a 21-month-old boy. I am also my partner’s carer – he has a lifelong severe skin condition affecting most of his body as well as a mild allergy to his own sweat, which in turn has an impact on his physical and mental health.
My autism, mental health conditions and my caring responsibilities have a heavy impact on my quality of life and functioning.
My biggest difficulty by far is with my executive functioning, the groups of brain processes that handle the regulation, control and management of thoughts and actions. Depending on if I’m having a good or a bad day, these are impaired to non-existent. I regularly forget to do basic things like change my son’s nappy before it leaks, take clothes out of the washing machine to hang on the clothes horse or finish putting clean dishes away. Long-term planning is extremely difficult: my brain can work out where I’m starting from, and what the end result of a task needs to be, but I can’t process the steps required to get me there, even if it seems like I know what they are. On the rare occasion that my executive functioning is working properly, I feel like I have to cram in as many tasks as possible to take advantage of my productivity. It ends either with a meltdown or complete and total exhaustion after a couple of days. I don’t feel like I have a choice to not work like that, otherwise I won’t be able to get anything done. At times, I struggle to eat decent amounts of food regularly. This is either because I am too stressed or depressed to think about eating even if I am hungry, or because I am so busy with what I’m doing that I don’t notice that I haven’t eaten until I am too tired to stay awake to make some food.
Being aware of my surroundings can be tricky, particularly if there’s a lot going on visually or audibly. When I wait at a pedestrian crossing, I have to keep my hand on the buzzer so I can feel when it’s safe to cross because I regularly space out and don’t notice that the pedestrian light has turned green or that the crossing buzzer has gone off. Phone calls are difficult. There’s no visual stimulus to help me fill in the gaps of what I may have missed when someone is talking. Unless I get someone on the phone who speaks clearly into the handset or microphone of a headset, and they’re located in an environment with no background noise, I miss information. I have to ask a person to repeat themselves several times, and even then I still miss some information. People also have to get me to repeat myself because I’m either not audible enough, even though I think I’m being loud already, or have spoken too quickly or have unknowingly mumbled conversation. People on the other end of a phone to me can get very frustrated very quickly.
It also doesn’t help that I have poor verbal communication skills, particularly with people I perceive to be an authority figure, and struggle to be direct and concise whether verbal or written. It’s like my brain has to go through all of the letters of the alphabet to get from A to Z. It makes it a challenge to stay on topic, particularly when anecdotes come up.
I struggle with regulating my emotions and processing emotions, whether mine or someone else’s. Basically, I can’t filter anything myself without lots of tools and coping mechanisms, and even then it doesn’t always work. I end up having a lot of crying fits, anxiety attacks and, rarely, full blown meltdowns.
All of this leaves me exhausted all the time. It takes a lot of energy to try and present as neurotypical when I leave the house, talk to people, to try and stay verbal when I can feel my brain shutting down, to run a household, to play with and pay attention to my child even when I’m physically and mentally incapable of doing it.
Managing my partner’s condition involves daily antihistamines, steroid creams multiple times a day, moisturiser and dry wrapping, bathing with bath oils and courses of immunosuppressants. We can’t get all of his treatments done every day because of our exhaustion levels, so my partner isn’t as healthy as he could be. When his condition is particularly bad, he undertakes phototherapy, which involves standing in a machine that shines UV light onto him for up to fifteen minutes three times a week for approximately 10 weeks. There’s always the risk of staph spreading too much on his skin, which means that he has to be placed in isolation at hospital in order to recover. We’ve been very fortunate that it hasn’t happened since we started our relationship, although my partner has come fairly close to being hospitalised a couple of times in the last 3 or 4 years. He also regularly participates in clinical trials. It’s frustrating to watch treatments that were successful in trial be stopped because they’re not ready for clinical use.
My partner is in pain the majority of the time. This is because there are minuscule cracks all over his skin, so water, creams, moisturiser and sweat can get in. The screaming and scratching fits can be distressing to watch. My partner’s sleeping pattern is almost non-existent. The amount of time it takes him to fall asleep can be anywhere from 5 minutes to several hours, and the sleep he does get isn’t restorative a lot of the time, because he wakes up prematurely from sleeping fits. My partner manages the pain with paracetamol and, until it was made script only, over the counter codeine. My partner also self-medicates the scratching fits with smoking; multiple attempts have been made over the years to quit smoking.
Due to the severity of our conditions, my partner and I can’t sustain long-term employment without our health deteriorating. The 2-4 days of casual work that we do pick-up from time to time leave us exhausted and, in my partner’s case, practically bedridden, for up to a week afterwards. My last two attempts at regular work lasted 6 weeks and 2 weeks respectively. I had to quit the first job, as much as I liked it, because my weight had dropped below 40kg due to the physical intensity of the job. The second job’s poor management sent my stress levels skyrocketing, to the point where I was constantly vomiting outside of work. Before my partner got too sick to work, he was working as a freelancer in the events industry. Because of that, we are reliant on Carers and DSP payments to get by.
I moved to Sydney from another state so I could live with my partner. Moving here was a fresh start for me. My late childhood, my teenage years and early adulthood wasn’t so great. In between a year of severe bullying at school in 2002 which was most likely the trigger for my depression, an uncomfortable home situation, the onset of my anxiety at 16, being held up at knifepoint at work at 18, failure to manage working and university study at the same time and being indecently assaulted while I was working with a photographer on a shoot, my mental health was completely and totally messed up.
Moving to Sydney was the best thing to have ever happened to my mental health. In my former city, my GP’s first response when I flagged the depression as an issue affecting my functioning was to prescribe antidepressants but not refer me to a mental health professional for therapy. Any therapy that I did eventually receive after changing doctors never lasted for more than a few months.
I found my first psychologist through an advertisement posted in a group on FetLife, a popular BDSM, kink and fetish social network online. The fact that the psychology practice was posting on FetLife showed me that I didn’t have any stigma because of my open relationship, or have to take excessive amounts of time in appointments to explain why I would do certain kink activities that the average provider simply doesn’t have knowledge of. As a bonus, the fee structure of the practice was a sliding scale, so the fees were extremely affordable.
My current GP didn’t hesitate in referring me to a psychiatrist when he was uncomfortable with assisting me when I needed to change antidepressants after several SSRIs and a trycyclic antidepressant stopped working for me. He referred me to a psychiatrist who he knew personally that consults through a private hospital. My psychiatrist has only bulk billed me. Two years ago, my psychiatrist was told by the hospital that he had to charge full fees. My psychiatrist moved me to his private practice in response.
I’ve been off antidepressants for approximately six months.
I had to change psychologists a couple of months ago. Unfortunately, my new psychologist wasn’t able to keep my old psychologist’s fee structure. My fees increased from $80 per session to $125 per session – an increase of 56.25%. Compared to the majority of psychologists, this is still considered affordable. Compared to a family reliant on Centrelink payments with approximately $60 spent per month on medication and other items medically needed for our conditions, and $115 every 3-4 months on my partner’s dermatologist? My psychologist’s fees are borderline unaffordable for us because of Sydney’s high cost of living, even with a Mental Health Care Plan because I have to see my psychologist every two weeks.
Seeing just any mental health professional is not an option for me. My psychiatrist has provided the option of seeing one of the mental health nurses at his practice for no charge to try and assist with my financial situation, which is affecting my stress levels.
My family’s budget is at breaking point. If my family can’t get our financial situation under control very quickly, I’ll have no choice but to stop seeing my psychologist and see the mental health nurse.
I wish that I could say that the few times that I have had to deal with the public health system specifically for my mental health was just as helpful. Unfortunately, I can’t.
I’ve needed to go to an emergency department twice for my mental health, once in 2012, and once the following year. The first time, my psychologist called an ambulance for me.
Pregnancy and parenting
I only got about 3 hours of sleep the night before I went to hospital to give birth. My cramping stepped up ten-fold, and I spent the evening making sure my bags were packed because I wasn’t organized at all. Contractions well and truly started about 8am. The pain was so severe that every time I had a contraction, I froze. I couldn’t even curl up in the foetal position, which is normally how I deal with cramping.
I had a 40 week appointment for that day anyway, so I called Delivery Suite to work out if I needed to come in early or go to my appointment and if I needed to bring my bag. Autism and contractions aren’t a good combination – the midwife on the phone struggled to understand me. I was told to go to my appointment and not to worry about bringing my bag.
We caught a taxi to the hospital instead of busing it in from the city because I was in a lot of pain. The contraction pain became more severe. By the time my midwife came out, I was hobbling instead of walking because I was in that much pain. Throughout the appointment, my contractions kept going. She decided to put me on a monitoring machine to track my son’s heart rate and my contractions; I was very much in labour with contractions at 10 minute intervals. There was discussion about whether to admit me, because it seemed a little silly for me to go home as I was already at the hospital and the contractions were only going to speed up. Fortunately, the frequency increased to seven minutes so my body made the decision for the hospital. This was around 1pm.
I regret not going with my gut instinct and taking my bag with me anyway. I wish the midwife on the phone had suggested to take my bag with us if it would make me more comfortable. We spent $75 in taxi fares that day when we only needed to spend about $20-$25. To be fair to the midwife on the phone, Delivery Suite was very busy when I was finally taken up – from memory, I had to wait about an hour and a half for a room to free up.
I don’t recall too much about labour itself, so I’ve had to rely heavily on what my partner has told me and my own diary entries from two months after giving birth.
I remember being shown the facilities in the room. There was a birthing bath in there. I wish someone had suggested to me to try it, because I wasn’t in a state to ask about it. I bounced on the gym ball for a bit, but then the pain got bad, so we put me onto the gas. My first breath of the stuff didn’t go so well. I felt woozy and light headed and numb and I didn’t like it one bit. I was encouraged to try again. The gas worked for a little while, but something changed and I went with an epidural.
Getting the epidural put in was the hardest part for me. I’m not great with needles, and you need to stay perfectly still in order for the epidural to go in. If you don’t you risk paralysis of the spine. I almost refused to get the epidural. I don’t know what would have happened if I didn’t get the epidural.
I’m told I slept through a lot of labour. I’m also told that I ended up with 4 different epidurals in me. I got so exhausted from labour that my midwife had to attempt forceps delivery and that still didn’t work. I was taken to the operating theatre and prepared for a Caesarian section while they made 1 last attempt with the forceps. Fortunately, that attempt was successful and I had successfully given birth to my son.
I remember suddenly feeling very hot and cold and shivering. I was being whisked out of the room. I woke up and tried rolling over, not realising there was a catheter in me. I felt tugging and a sharp pain.
I asked for my son so I could breastfeed him. I couldn’t. The midwife assisting me with birth hadn’t filled in the paperwork correctly. It took two hours from when I gave birth for me to be able to feed my son. My partner missed my son’s first feed.
I have never had a formal assessment for autism. My mother started the assessment process for Asperger syndrome for me when I was around 4 or 5, but didn’t complete the process because she was deeply unsettled by the epilepsy testing done on me to rule it out. My former psychologist put on formal paperwork to education providers and the Housing Commission that I met the diagnostic criteria for social communication disorder, my psychiatrist wrote that I met the diagnostic criteria autism.
Over the years, autism has taken over just about everything in my life. Compared to my teenage years and early adulthood, my functioning is the worst it has ever been, despite my mental strength, autism has overtaken just about everything in my life, to the point where my functioning levels on a day to day basis are the worst they have ever been, even though my mental health has improved by leaps and bounds.
Paraphrasing my psychiatrist, because he considers me to be “high functioning”, he feels like there would very little to no support available for me and I wouldn’t be successful with an NDIS application. This is despite me having ‘traditional’ meltdowns on an increasingly regular basis, struggling to make necessary phone calls, executive dysfunction and lapses in concentration, all of which inhibit my ability to properly care for my child and partner and run a household, let alone taking care of myself on top of that.
I want to proceed with getting an autism assessment so I can try and access services regardless of my psychiatrist’s opinions of my chance of success. I can’t keep living like this. It’s not healthy for me, it’s not healthy for my family. However, to my knowledge, no-one can provide low cost assessment services for an adult. In NSW, the cheapest assessment costs that I can find that I could use to access services are around $1500. This is not affordable families on a low income like mine that realistically cannot sustain long-term employment. For me to be able to afford an assessment anytime soon, I would either need to ask my family or friends for the money, or uproot my family and move back to my former city, where a diagnostic assessment through the local Autism service provider costs $400.
Emotional impact and what I need
I am tired and exhausted because of having to deal with the health system. I am sick of having to deal with the emotional fallout every time I hit a roadblock with getting the help I need to sufficiently function on a day to day basis. I shouldn’t be avoiding getting essential treatments I can’t otherwise afford to get done privately because the way to book an appointment is by phone.
I want paramedics to stop pressing for my Pensioner Concession Card when I’m being taken to Emergency in an ambulance and I’m having a crying fit, because that sure isn’t going to calm anyone down when all they want to do is die.
I want mental health nurses to stop assuming that the slightest amount of yelling when someone is distressed is aggression directed towards them.
I want whoever’s calling me to organise outpatients services after I’m discharged from Emergency to mention to a highly depressed and anxious person with diagnoses of major depressive disorder, generalised anxiety disorder and social anxiety disorder to explicitly mention what to expect and how many people to expect.
I don’t want to feel like that I don’t have the option to refuse to go through with an appointment when two professionals turn up to my outpatients when I was reasonably only expecting one person, having a professional refuse to leave when I request it because I’m extremely uncomfortable citing “safety reasons” out of fear of being involuntarily sectioned because I’m feeling extremely suicidal.
I don’t want to have to lie on the follow-up phone call when they ask me if I’m feeling suicidal just so I no longer have to deal with a service.
I want medical professionals to actually listen to me when I talk to them and check to confirm what I’ve said, not have to constantly explain that it’s me that’s probably autistic, not my partner.
I want midwives, psychiatrists and mental health midwives that aren’t so overworked that they can take the time to make sure that I’m actually functioning and getting out and not assume that 24 hour channels are watchable or workshops in the mornings are feasible for everyone to get to.
I want to be able to access STI and Pap smear testing in easily accessible locations, and not have to travel to a non-profit service 40 minutes away on public transport just to access no-cost tests, or feel stuck with sub-optimal for me contraception while I organise getting an affordable IUD.
The biggest struggle that a person with autism, a person with mental illness has to contend with is lack of understanding and sympathy from the general public, and barriers to accessing things like employment, housing and social security. These struggles are made so much easier to manage and bear if the health system is as painless and stress-free as possible. As my psychiatrist keeps telling me, if I can remove the stress and get my personal life as stable as I can, my mental health will keep improving.