I am an adult female with Asperger’s Syndrome (now just Autism Spectrum Condition). Until I was about 27 years old, I never had a ‘name’ for the condition which now explains many of my life’s challenges. Here, in my blog, is a recount of what it took for me to get a diagnosis as an adult.
While I was growing up, autism in females was not heard of. Asperger’s, in general, was only starting to be talked about as it was added to the DSM-IV in 1994. I would have been close to eight years old at this time. Although it sucks, I can hardly be outraged by the fact that nobody picked up my condition in childhood. It does take years for new knowledge/changes to become more mainstream; in professional practice and society.
I remember seeing numerous specialists in childhood because my parents had concerns that I wasn’t developing (physically, mentally, emotionally and socially) at a normal rate. I was a very picky eater, I was quiet, I was too sensitive, I learned to talk quite late, I was slow to learn certain things, I was too clumsy, I had issues making friends, I was inattentive and I had other related issues. I was labelled a slow-developer. I think specialists thought this was partly due to limited family support (all my extended family lives overseas – I only have my mother and sister living in Australia), as well as being from a culturally and linguistically diverse background. Professionals probably deduced that it would be something that I would ‘grow’ out of and did not need an intervention: if any existed at the time. Unfortunately, my mother has never been a strong advocate for getting our needs met, and was also hindered by language barriers. In addition to this, I suspect mum sits on the spectrum but she would need to get herself diagnosed.
Co-occurring to all these check-ups, I had a tumultuous home life. There was family violence within the home. A psychiatrist that my sister saw speculated at one point that my father had bipolar. He was also prone to addictions (gambling, alcohol, drugs, smoking etc.). My dad had spent time in gaol for minor offences, namely driving whilst under the influence or with a disqualified license.
I began to have issues at school at age 8 and 9. The differences between my peers and myself became more and more evident (interests and social understanding). I also started experiencing more issues with teachers (i.e. bullying). In response to this, my parents moved me across to a new school at the start of 1997 and made me repeat the year (so, that I could have more time to socially mature). However, my father passed away unexpectedly the day before I was to start at my new school. I don’t think I recovered well after being inundated with all those stressors and isolation. There were no support systems in place for me, no grief counselling or bereavement support. I struggled to form new friendships and became quite withdrawn. This pattern continued on into high school.
When I started high-school, I was alone again. My peers chose to go to other high schools. I went to an all-girls Catholic high school. It took me quite a few weeks to establish friendships. I recall being picked on by other students throughout my first three years of high-school. I still hold some resentment toward a few of these individuals. Toward the end of high-school, most just ignored my presence. I became invisible.
I think the black dog really started to follow me when I was sixteen. I am pretty sure some teachers picked up on my dark moods but chose to ignore it. Going to the school counsellor was not useful, particularly with concerns I had regarding teachers and students. Perhaps that is a story best left shared for another time, as it is quite a long one.
In my late teens and early twenties, I struggled with depression and anxiety. I retreated into my own world and rarely left home. I started experiencing severe anxiety accompanied by somatic symptoms i.e. stabbing pain in my gut. My body would get caught in a state of panic and would not calm down. I started vomiting from stress on a daily basis. It culminated in a breakdown and a visit to the psyche ward at my local hospital at age nineteen. It was not a positive experience and I left feeling immense shame. When I was released from the hospital the psychologist just told me that I was ‘over-sensitive’, but gave no further elaboration.
Again, I was thrust back out into the community with no supportive services in place or an answer to why I was so ‘strange’. It was up to my family, namely my sister and her partner at the time, to manage the situation. They were expected to assist manage the situation with the little mental health understanding they possessed at the time, causing more harm than good at times. My sister also had a breakdown and developed panic disorder around four months after my breakdown. So, she was not in a position to give support because she needed it herself.
I eventually got myself to a point where I could better manage my anxiety and depression. I became quite obsessed with ‘fixing’ myself. I tried a range of things including modifying my diet, exercising regularly (e.g. gym, walking and yoga), and reading more mindfulness and spiritual based books. I gave up on pursuing any form of professional help, in fact, I grew to resent mental health services. I can say that I was quite temperamental up until age 24. I still have my moments now. This anger was exacerbated by work, home and studies. I started to experience fatigue after my breakdown and still continue to have mild fatigue to this day.
I was completing my first and second university degree up until age 24. I did not socialise much outside of work, due to social anxiety. I spent a large amount of time on online communities and pursuing interests online. I avoided engaging with the offline world as much as I could. I could see that I was falling behind my peers in terms of social maturity, and this did cause a bit of apprehension.
I started to consider social work as a career path around age 23 or 24. I think people, even then, tried to dissuade me from following that career path. Perhaps because I was still a bit prickly and anti-social at that age, due to being de-regulated. And the effects of trauma. I quit my job and went travelling for several months overseas at the beginning of 2011, and enrolled in a master of social work when I came back. I started the course at the end of 2011. I graduated with an academic award of excellence in December 2013.
Was it a good idea to pursue social work? At the time I did have my doubts because I knew there was a huge social gap that I needed to bridge. I made it a mission of mine to read as much as I could about communication, socialising and relationships. I also used the practical experience to develop my social confidence. Perseverance got me through. Was it hard? yes, it was. It was hard to express my challenges at the time and I was constantly searching for social-feedback e.g. was what I was saying appropriate? what do I need to say in this situation? why would you say that in this situation and not that situation? what processes did I need to follow? why was interaction with others so challenging?
I remember that my first supervisor, on my first placement (clinical), was quite boggled at times with my inability to grasp the ‘bigger picture’. She generally seemed to be quite frustrated, maybe it was the nature of work i.e. palliative care. Retrospectively, I can see that this was part of autism, a focus on details. I did experience quite a lot of stress during this placement, as unresolved stuff rushed to surface.
During my second placement, I decided that I would seek external supervision, for social feedback. I did this for accountability purposes, as I did not want my lack of awareness to cause others harm. I also wanted assistance developing my communication skills. And because I had quite a few triggers on my first placement and wanted to better manage it if there was a repeat of experiences. I left feeling quite unsupported during my first placement. The psychologist I was referred to was quite interesting, as she was meant to have specialised in social isolation and alienation. In the end, she seemed like quite a judgmental person to me. My second social work placement (in 2013) was in youth homelessness.
It was through this work-placement that I stumbled upon information about female presentations of autism. One of my projects during placement was to compile resources on spectrum conditions. Shocked at seeing myself in the female presentation I approached my external supervisor at the time, as well as the psychologist that was part of the organisation I had my placement at for assistance. I wanted to know what steps I could take to receive a diagnostic assessment. Both psychologists scoffed at me and did not believe I could have autism. Their reasoning was that I could socialise quite well. Sure, I had developed a lot of skills by that point, but they were only privy to the outcome. They didn’t see the work I had put in or the journey I undertook to get to that spot that they could see. I am a master at making things look like everything is okay.
Unfazed by their scepticism, I looked into what diagnostic services were available in my area and booked myself in for assessment. I underwent assessment three weeks before I graduated and during my last week of placement. I had it confirmed that yes I do indeed have Asperger’s. To challenge the naysayers, I informed one of the psychologists about the outcome of my diagnostic assessment. Who then, without my permission, informed his colleague. This psychologist ended up having his view (about autism) challenged once he saw that I was missing out on key social cues during a group event, and at my farewell.
After graduation, I went job-hunting and applied for graduate social work positions. I made the silly mistake of disclosing my condition, based on the fact that organisations have anti-discrimination policies and are open to hiring people with disabilities. I had a bad experience with NSWHealth (specifically Nepean Hospital), where the head of education in the social work department said that I couldn’t have Asperger’s as I could maintain good eye contact i.e. I can stare at people (I find this funny as feedback from subsequent interviews have stated that I have come across as shy or lacking confidence because I haven’t maintained eye contact).
You can’t diagnose or dismiss a diagnosis just by looking at someone! I didn’t get the position and was not provided with feedback as to why (even when I asked for it). Needless to say, this caused a reaction in me and I pursued the complaints processes. This complaint did not really get me anywhere, as the head of allied health took the side of his employee, and said that he was assured that his employee treated me justly. Essentially he was saying that I was lying. This riled me up further, as I felt I now needed to take a voice recorder with me everywhere (note: This a prime example of retraumatisation and traumatic responses to a situation). I submitted a complaint against the allied health department head to NSWHealth. I am not sure what the outcome was if there was any. NSWHealth is quite poor when it comes back to responding to people. IMO, in issues such as this, the Human Rights Commission is also another joke process. (Update May 2017: I recently revisited this issue and subsequently received a letter to say that Nepean will be implementing an education program for staff regarding Autism and Autism in females).
This questioning of my condition did make me doubt myself (i.e. did I really have it?), so I pursued another diagnosis with a different specialist in a different state. It was again confirmed that I have Asperger’s Syndrome.
In the subsequent months after my diagnoses, I did go through a range of emotions, from anger to sadness. I was angry because there was a justifiable reason why I was so peculiar or seemingly broken, and I was sad because I knew that I was going to continue to experience a whole host of challenges/barriers. I experienced regret because of all the missed opportunities. I was also conflicted about whether I wished to stay in social work. My supervisor from my first placement questioned whether it was the right idea for me to be in this field. Although it has been challenging (it is getting easier over time, as I form patterns in my mind) I am glad that I have stuck with social work, and have learned to be more patient with myself. I am on the long and winding path and that is okay.
Since those initial months post-diagnosis, I did undergo further tests to see what my areas of challenges were at a clinic specialising in autism. One of those was feedback from a sensory questionnaire, which I will post separately.
Thanks for Reading my story!