Maggie is a neurodiverse consultant working with KINECT Australia as a program advisor and content developer.
On the surface, the culture surrounding autism has changed drastically since I was a child. However, some of the most fundamental sociocultural barriers to genuine inclusion persist. As an autistic woman, an autistic mother, and someone who wasn’t diagnosed until adulthood, the effects of autism and how it is treated suffuse my entire life. I am still working through my past and finding new experiences, feelings and developmental directions that suddenly show themselves in a new light – I can see them for what they are now, and I can begin properly fitting them into the ever-shifting, often hazy puzzle of my identity. I don’t blame anyone for what I have gone through in my ignorance of myself – it’s not an unusual story, particularly among women and girls, and it isn’t the fault of any one person. Rather, it is one of the many symptoms of the culture around autism that was forged by people who were confident that they were doing right, but who didn’t, or couldn’t, listen to the people being painfully pressed into moulds that could never fit. People are beginning the see the cruelty and false efficiency in the rejection of individual differences in the workplace and daily life. This realisation has put us all on a better path – one that I, personally, am keen to walk as quickly as is reasonably possible.
I think I first heard of autism in year 5 at primary school. A new boy came into our class and we were told that he had something called Asperger’s Syndrome, and we might find that he behaved a little differently. I was fascinated – no one in the class had heard of it, and the teacher didn’t seem entirely sure of how to deal with it either, which I thought was pretty cool. By the end of the day, I hated that boy. Hated him. I wanted to be nowhere near him. I didn’t understand him, or how he got away with making those awful noises, or why he kept talking to me when I had made all of the signs that I had carefully learned to make people go away without offending them. My teacher was surprised at how rude I was becoming towards this boy. I was usually very polite in the classroom, so what had happened here? Looking back, I can see quite clearly that what happened was a clash of strong sensory needs and social strategies. He needed noise, and to make noise (like sudden high-pitched squeaks or loud singing) and had learned to simply persist in social interaction given that he lacked the capacity for finesse. I, on the other hand, needed quiet and an absence of sudden change in my sensory landscape; I had learned to try to avoid negative social engagements by adhering to a list of rules that I had built, largely gleaned from adult interactions. This rigidity was sometimes wildly unsuccessful. I had also learned to try and supress my ‘odd’ behaviours – this kid seemed perfectly happy and confident with the way he was behaving, though I have no idea if that was truly the case. As far as I was concerned, that wasn’t fair. A perfect storm (forgive the cliché), and no one’s fault. Sorry, Thomas – you were really nice to me and didn’t deserve my rejection and rudeness.
So, why was Thomas diagnosed and I wasn’t? There are many answers, most of which can be wrapped up in the gender culture in autism diagnosis, and the culture of silence surrounding the behaviour of ‘smart kids’. I previously said that I was usually polite and quiet – well-behaved. I also performed well academically (when I chose to) made jokes, and liked chatting with my teachers. I was chubby and clumsy and bullied. I was simultaneously liked and, I believe, slightly pitied by most of my teachers (who I much preferred talking to over my peers). Also, very importantly, I was a girl. The rates of diagnosis between girls and boys on the autism spectrum have always differed, with many more boys being diagnosed than girls. There are problems across the board in medicine and psychology when it comes to respecting female experience and considering their behaviour seriously. This barrier can be significantly compounded by how autism tends to manifest in girls. For whatever reason, girls seem to mask their autistic characteristics more often and more successfully than boys (I am speaking in the gender binary because that is how most research has been conducted). All of the above contributed to the blind eye that was turned to my occasional massive explosions, refusal or confusing inability to complete major assessment tasks, and (rare) episodes of actual physical violence. I screamed, scratched, cried, refused to work with others, and complained constantly of headaches and stomach aches, and almost none of this made it home. My teachers never told my parents. I’m sure they thought they were being kind, going easy on me, but the culture of silence just fed into itself and I was left to deal with my anger, confusion, isolation and growing anxiety almost on my own – my parents didn’t know I needed help for anything more than a little social anxiety and awkwardness. I didn’t tick enough boxes in anyone’s eyes, and there was such a lack of general knowledge in the community (even the teaching community) about things like autism. I wonder sometimes what would have happened if I was a boy, or if I wasn’t academically inclined – would people have wondered then if something more was going on?
Moving through my teens, I was still coping with the deep-seated feeling of being different, which had unfortunately evolved into feelings of being broken and wrong. I had personally gained more knowledge of autism, as I found it a compelling thing to learn about. In my school library, I found old hardcover books about children with autism (invariably boys with special interests like wheels, dinosaurs and mechanics), and a babysitters’ club book about a little girl who couldn’t speak and wet her pants, but played the piano like a dream and remembered dates flawlessly. I want to stress that I am not putting down anyone who’s experience of autism looks like this, but this was all I could find. This, and Rainman, seemed to be how the world (my world, anyway) saw autism in my very early teens. There were bits and pieces of the experiences and checklists in the books that connected with me, but I didn’t look like those people, so I couldn’t be autistic. I later realised that this was where my experience of the ignorance of autism started to merge with my experience of stigma, and those natural bedfellows have never since parted.
Over the next few years, my understanding of autism grew, and I observed a fascinating sequence of shifting stigmas and attitudes. First, there was the idea that you were either severely disabled, or you were fine (a common belief even now). Autism as a different way of thinking and behaving was simply considered fake, ‘not a thing’. This is strongly connected to the next phase: aggressive medicalism – no doctors, no medication, no obvious disability = no autism. Autism exists, but even thinking you have it without the signatures of all the doctors in the city (I exaggerate) and a bottle of pills was lazy and self-indulgent. As I moved into late high school and college, things had shifted toward a phase of ‘pseudo acceptance’- leaning on the old ideas that autism was almost invariably visibly disabling, but tempered by increasing awareness, people suggested that people who looked fine and came to school were faking autism because it was ‘trendy’ (instead of because it wasn’t real), and that was the wrong thing to do by the people who ‘really had it’. Throughout all of this, my mental health was in tailspin - partly because of long-term stress and social difficulty, partly because of my ongoing identity crisis (worsened by my self-judgement over thinking I might be autistic) and partly because of stuff I reckon was coming to me anyway (bipolar affective disorder was on its way, I was already medicated for anxiety and depression). I had batted the word ‘autism’ back and forth with my psychiatrist, but there were more pressing things for us to deal with.
Autism sat on a kind of strange back burner for the next 6 or 7 years. I thought that I was very likely autistic, but no one seemed to want to back me up on that. No one said ‘no, you are definitely not autistic’, but I am surrounded by people who are very hesitant about ‘labels’, for varying reasons – something that had an impression on me that I am sure was not intended. So, being both severely anxious and disinclined to trust my own experience, I left it alone. I wasn’t actually diagnosed until I was 24. In that time, I had had a manic episode and been diagnosed with bipolar disorder, I had started three degrees and finished one, I had had a couple of jobs that hadn’t ended that well – I’d even had a baby. I had my beautiful boy in the February I would turn 24; I was then smacked (unsurprisingly) with postpartum depression and psychosis. I went to hospital and was diagnosed as autistic by my assigned psychiatrist, confirmed by my usual psychiatrist. It was as easy as that – who knew? I was relieved and vindicated. I was still hesitant to say it to other people though, because what if I had misunderstood the doctors? What if it was a provisional diagnosis? What if…? My internalisation of the shifting cultures and stigmas that I had grown up with had left me scared to say that I was autistic – because maybe I wasn’t really, maybe I was just lazy or looking for a trendy label.
However, the world is continuing to change. It is not a straight, nor a smooth road. Even in the medical profession, attitudes seem to change constantly from worrying about underdiagnosis to worrying about overdiagnosis, and that’s not even looking at what psychologists and OTs deal with in terms of attitudes toward ABA and other therapeutic/educational options. People are talking now, though -in the open. People on the autism spectrum are talking too, with each other and to the world. The rise of the internet has provided a forum for people to share their experiences and explain how they see the world – a way for the neurodiverse and the neurotypical to connect on a fairly level playing field.
As I said earlier, some fundamental cultural barriers to inclusion remain. The fear and/or rejection of the usefulness of labels and diagnoses can be deeply harmful. I acknowledge that it is dangerous to pigeonhole people, or to make it too easy for others to do so, but preventing people on the spectrum from accessing a diagnosis or making their own decisions about labels is gatekeeping – regardless of the intention behind it. It’s possibly the simplest way of making sure that a person on the spectrum has a much-reduced chance of accessing supports, connecting with a community where they can find understanding, and finding validation and reassurance about how they experience the world. I would never encourage forcing a label on someone, or using it for them, but it is important to give people the chance to explore the labels that might fit them and decide how and when to use them. The public image of autism has shifted, but it remains dangerously homogenous – people hear you have autism/are autistic and then think that they know you. The neurodiverse community is as vibrant and varied as the neurotypical- you have to put as much effort into getting to know us, professionally or personally, as you would anyone else – and you should.
Maggie and her son.