Born in 1962, I was an unusually quiet baby. I began to have seizures that shut down my respiratory system at around 10 months old, and was eventually tested and diagnosed with frontal and left temporal lobe brain damage. Troubling behavioural differences which left my family desperate emerged over time and in stages. Some milder peculiarities, such as drawing detailed pictures up-side-down during early childhood, were also present. A diagnosis of “some form of autism” was determined. 

My artwork eventually rotated side-ways, and became completely upright by about 4 years old. I spent most of my early childhood in hiding, in dark cupboards and under the house. For me it was the only way to obtain some measure of peace and control over my environment, and I remember covering my ears as people called my name. 

Children of my generation were praised for being quiet – to be “seen but not heard”. I was selectively mute with everyone but my family and this continued until about the age of 8, and on a more moderate level well into my 20’s. Early development of language skills within the family environment, and the presence of other skills, apparently indicated the likelihood of high intellectual ability. I achieved academically well beyond my age, despite ongoing social and behavioural problems that were the bane of my mother’s life. The emotional meltdowns caused by sensory overload were misinterpreted as extreme tantrums, although some behaviours appeared to improve. The autism diagnosis became less relevant, and I was simply a child who behaved badly. My last autistic seizure at age 6 marked the end of any real assistance or support for almost 35 years.  

My teenage years and early adulthood were very troubled, and left deep emotional and psychological scars. Like my family, I had long discounted autism as being a misdiagnosis that, together with my brain damage, had to be kept secret. It was only mentioned briefly and in behavioural contexts, such as “The doctors said this would happen…”  What exactly was supposed to happen was not explained to me, until I specifically asked my mother in recent years. So the stigma of my apparent bad behaviours was cloaked in mystery, and I lived with the constant fear of being found out and institutionalised for some secret mental illness. 

Autism and eugenics were still strongly linked in the 1960’s and 70’s, especially in the broader social arena. I recall the suggestion to not have any children being made several times to me, but I didn’t understand why. This would have far reaching effects later in my life, when I pondered my self worth through a social lens. It would also discourage me from any genetic-based research participation, for fear of those with autism being identified and targeted. This is something I still fear, especially for my children and extended family.

Instinctively I knew that I was very different, and definitely not normal. Luckily my artistic abilities gave me some measure of acceptance. However, most other people considered me odd, emotional, distant, a misfit loner, obsessive, passionate, gifted, or mentally ill. Worst of all, I felt that I couldn’t talk like other people. I frequently lost the ability to articulate, especially in emotional circumstances. Even my relaxed speech didn’t come out right. It simply never matched my thoughts or intended communications – my mouth was out of sync with my head. I could lose entire words, phrases and sentences, or make poor or illogical substitutions. I knew what I wanted to say, but rarely succeeded. I felt that I was a sane person locked in a distorted experience of life. People formed opinions about me, and cultivated behaviours towards me, based on my inability to communicate my thoughts articulately and unemotionally. Even I found my emotional outbursts frustrating and distressing.

Most people emphasise how those with Autism Spectrum Disorders (ASD) cannot see the “bigger pictures”, however I am often amazed at how many people cannot see the smaller pictures that make up the whole. I do see bigger pictures, including representations of abstract ideas, but not in the way that other people do. The following explanation is not about seeing visually, but about how I perceive whole concepts and ideas – how I think. My bigger pictures are like some Indigenous Australian art works – intricately coded representations that use colour, repetition, shape, pattern and order, placing every component carefully and meaningfully. Or like pixels of an image. Asking me for my bigger pictures is like trying to explain the meaning behind every dot or stroke using one word or phrase. The picture is there in entirety, but with a depth of meaning that would surprise most people. This is why I take so long to respond – I am busy investigating pixels, or strokes. I am processing every fine detail and looking for the links – the “story”. I cannot generalise an image or concept without much deliberation. Given enough time, though, I think more holistically than many people would guess and sometimes more than they could.

People who did try to communicate with me usually became frustrated.  They finished my sentences (often incorrectly), talked to me as if I was intellectually impaired, and generally showed impatience that resulted in my withdrawing from communication in anger. I could neither defend nor explain myself. It was made clear by most people that my problems were considered to be a personality flaw that was under my absolute control, and that I simply wasn’t trying hard enough. This continues to this day.

It took me many years to understand abstract language, such as metaphors. Similarly I had no concept of reading facial expressions or body language. Like most other autistic people, my sensory impairments interfered with early physiological and social developments that enable these skills. I was naively unaware that communication also involved processes such as lying, teasing, manipulation, and power play, and only began to realise these were something to be aware of at around 8 to 10 years old. I still have extreme difficulty with these, even though I understand them in an analytical sense. They just don’t seem logical or ethical, and in fact I consider them to be anti-social behaviours that unnecessarily complicate human behaviour. I don’t understand any positive purpose for these behaviours, and often wonder what the world would be like without them.

I was socially inept and isolated. I still don’t know what is expected of me in the myriad of social situations which occur daily. I have to manually analyse every social encounter. I compare to previous experiences, consider possible responses, and calculate probabilities of successful outcomes matched to these responses. This can be hard in short time frames, so I learnt to use standard social default phrases such as “How are you?” These occasionally don’t work so well, especially when it may be obvious how the person is. Paradoxically I hate it when people ask me that question, as I don’t know how to answer such a broad and open question. How am I what? With regard to what exactly? How much do they want to know, and why?  However, at 46 years old, I must say that years of repetition and practice usually get me through quite well.

I am connected, inseparably, to the environment. This connection, while sometimes overwhelming with its heightened sensory awareness, has endured since early childhood. Every moment of my life is inextricably linked to a wholeness that extends beyond me. I don’t “go for a walk” – I walk through and with, aware of almost every natural thing I am immersed within. This is something that some cultures retain. However I am saddened by what I see as a disconnection between many cultures and the environment. 

I find environmental conditions such as bright light, and sudden or high pitch noises, to be physically painful and distressing. I didn’t realise that my sensory experiences were not shared by everyone. I just thought I couldn’t cope. If I frowned due to visual sensitivity or glare, or avoided exposure through isolation, I was further labelled as behaving badly and sometimes punished by those with authority. This probably originated mainly within my school experiences; however it carried over into my working life and in broader social contexts. I developed a deep-seated fear of authority figures, whether social or professional. Almost everyone has the power to punish, in one way or another. Many just don’t realise the power they wield, some intentionally misuse that power, and a rare few reach out and meet me half-way.

My inability to maintain eye contact was interpreted as deviant, defiant, or inattentive. My propensity to talk at high volume was misinterpreted as yelling, and my poor choice of words regarded as deliberately inappropriate. I had few friends, and none that I kept for life. I didn’t know how to play or have fun, and some early motor skill issues made me the last choice for team sports at school. I was rarely included willingly in games or social circles, and spent much of primary school following others who seemed to become adept at losing me.  I desperately craved social inclusion, but didn’t know how to make it work. I also did not realise that it required a higher level of verbal and social interaction skills than I possessed.

I have observed that females with ASD are usually consummate imitators. Apart from having mild echolalia, I began to imitate behaviours and speech patterns of others at about 10 years old. I still do this – why not? If I see something work for someone else I will generally copy it at some stage. That has advantages, but it can also have disastrous consequences when used out of context. If I really admire someone I even take on their accent and idiosyncratic speech characteristics. That can be embarrassing. I credit imitation, coupled with being a “quiet and aloof observer”, as allowing me to appear almost normal to many people in my early twenties and thirties. I now mostly just want to be me, and strangely enough seem to be making up for lost time. I could talk for hours, on my chosen subjects. 

I could not adjust to university after high school, and fell into a tedious but safe administrative career that was very structured under the old award system of employment in Australia.  If I did my work quietly and within a rule-based environment I could manage, barely, to get by.  Eventually, however, I found it hard to find any employment at all as the Australian labour market deregulated and unions lost powers to protect and advocate. Every job became a competition for the perfect performer, who seemingly has super powers of communication. I am unable to successfully negotiate employment contracts – especially remuneration.  Disclosure of impairments is fraught with danger, and non-disclosure usually ends in a short employment period that terminates under stress. Equal opportunity does not work in practice, and discrimination is hard to prove. 

Desperate to please others, those with ASD are often exploited financially, socially, and physically. This can lead to depression, substance abuse, physical and psychological abuse, sexual abuse, welfare dependency, institutionalisation, self harm, and a much higher than normal mortality rate. I will not divulge some of the more traumatic episodes in my life, save to say that discussions with other ASD females highlight common experiences. We may also find it difficult to communicate distress, pain, and illness.  From my experiences and discussions I believe that work injuries are common, and we are largely unable to represent ourselves successfully in medical, vocational or legal systems. Systemic barriers in health, justice, and education marginalise us to lifetimes of untreated conditions and unresolved traumas.  Even basic health care, such as dental visits, become challenges that overwhelm. 

By the age of 40 I needed answers. I had spent my life analysing my personal, medical, and family history in depth.  I consistently noticed several aspects or conditions that required investigation, or which appeared to be related to ASD. I was re-diagnosed with Asperger’s Syndrome, although I simply prefer to be known as autistic. I find that people over-generalise Asperger’s Syndrome, creating a label primarily associated with males. Labels often direct human behaviour, absolving people from searching for the individuality or identity of those they are interacting with. I am also tired of having to justify my “alleged” condition, simply because people may be conditioned to a particular representation of autism that I don’t conform to. I often wonder how they would cope, if they had to defend, justify and explain something so personal and pervasive. Sometimes it is a positive opportunity to educate, but many people find the information confronting or unbelievable. It is usually their last voluntary interaction with me. 

The second diagnosis was both an enormous relief and greatly distressing – the published knowledge, research and popular opinion left me feeling misrepresented. I knew that the basic tenets were there, but was disappointed with the lack of understanding of females with ASD. I began noticing common threads of life stories and experiences with all of the ASD women I knew or met. Most were undiagnosed, diagnosed late in life, or refused diagnoses due to stigma. I felt that this incorrectly influences diagnostic criteria, and that this partially explained the disparity of the male to female ratio. I also felt uncomfortable with what I considered to be gaping holes of knowledge and flaws in testing, especially relating to the genetic and sensory characteristics and implications. 

I couldn’t understand why it was taking so long to unravel the autism mystery, when I had made several key observations which include linking certain hormones and sensory impairment to the condition. I had assumed that people knew more about autism. I gradually realised that this could be partially due to two innate characteristics of ASD – our difficulty in communicating or having a realistic role in discourse, and the hidden “female” population. Without a correct set of diagnostic tools that identified females, and with a history of not being listened to as we are assumed to be deficient, any answers would remain distant. This was emphasised when my youngest daughter was diagnosed at 6 years old. She simply didn’t receive the attention or credibility of boys with ASD, given that her behaviour did not conform to the label. It was then that I decided to find my voice.

In 2008, despite many financial pressures from being unemployable, I obtained entry to an undergraduate psychology degree. My initial goal included developing Art Therapy for ASD, and contributing to ASD research; however the journey is providing clarity of purpose that is now much broader. Access to current research and data is encouraging, with my analytical intuitions over the years proving to be well founded. I am pleased to see the push to overhaul diagnostic criteria, and a growing acknowledgment of the male/female disparity. Hormones feature more prominently in many studies, with particular reference to those undertaken at Cambridge University, and which provide a logical base of reference for gender differences. 

The role of sensory impairment also appears to be increasingly recognised as being critical to ASD presentation and co-morbid disorders. This excites me, as it should broaden the way that our very individual characteristics are viewed. For example, I view my prosopagnosia (face-blindness) as being directly linked to my senses. Early sensory impairment meant that I missed developing certain brain pathways linked to facial recognition. My brain learnt to minimise incoming information in verbal communication by concentrating on what I hear. So while I may appear to look at people, my vision is actually kind of shut down. I don’t form impressions of faces as I am working out what I am hearing and what I need to say. It takes many interactions with a person before I begin to identify and remember their face. When I have achieved a familiarity within our communication I usually pay more attention to visual information. More simply put, if I don’t initially look at you it is likely that I am paying close attention to what you are saying.

I am now hoping to concentrate my post-graduate studies and research around the impact of sensory impairments upon developmental delays, with particular regard to attachment and bonding in infants with ASD. This has broad implications on social development, communication and, ultimately, anxiety and depression. A genetic basis implies the possibility of extremely early intervention, but only if diagnostic criteria can more accurately identify adults and females with ASD. This is a life-long condition, and there are many more of us out here than current statistics capture. Issues such as stigma, and inadequate adult diagnosis with special regard to women of childbearing age, will continue to impede positive outcomes. If these can be addressed then there is an opportunity to apply interventions from birth, catching crucial early developmental windows of brain development.

My first-hand experiences of educational and social barriers at university have also inspired me to examine those aspects of ASD which I feel to be socially ascribed through the behaviour and attitudes of the non-ASD population. I am particularly interested in systemic Able-ism, social exclusion, and discrimination; with a holistic approach that embraces the shared experience of all marginalised communities and individuals. There are many aspects of our society which contribute to social marginalisation, and I don’t believe that these are necessarily insurmountable. I am inspired by how different cultures view autism and other conditions not as abnormalities that bring fear and shame, but as differences in existence that are integrated into community and culture.    

I am dedicated to exposing the popular myths about ASD, and supporting de-stigmatisation through open dialogue and advocacy. One goal is to contribute to the establishment of networks that foster inclusive education, economic independence and diversity in employment for those on the spectrum. I am critical of research funding directed towards advantageous aspects of autism that others seek to replicate in non-autistic populations, or of exploitation of our talents for financial gain. This relates specifically to giftedness and savant abilities. It saddens me that Western, individualistic society still seems to want the good things others may have, whilst ignoring their overall plight and desperate need for assistance in basic living conditions and life skills. I believe that those with ASD have so many things to tell and give to the world willingly. 

Despite my many struggles and a lifetime of slow awakening, I do have a deep sense of abiding empathy with all beings. My unbreakable trust in the basic goodness of most people reinforces my passion for social justice.  I hope my story gives hope and passion to others affected by autism.  If you look deeply enough you will always find answers – just not the ones you may have anticipated. Never stop searching, and don’t give up.

To those without autism, this story is for your insight and understanding. It isn’t my whole story, or our whole story. But it is my gift to you.    

I am proudly autistic, and I finally have a voice. My journey into the outside world is just beginning. Come with me.