Upon hearing the term autism, you may be inclined to visualise a male individual. Consider, for instance, a non-verbal youngster who follows his mother around the supermarket, donning noise-cancelling headphones. He refrains from eye contact as you try to reach for your pack of potato waffles. Alternatively, you may envision an emotionless man, struggling in the online dating world, with a penchant for collecting Magic The Gathering cards and an impressive knowledge of train schedules dating back to 1984. Upon the mention of trains, his stoic demeanor may dissipate, and he’ll engage in a conversation for hours. In the event of limited information, you may resort to the antiquated Rain Man stereotype.
These frequently held perceptions present two caricatures of autism in our culture. The former is the eccentric, socially awkward genius who has trouble fitting into societal norms, while the latter is the socially disadvantaged loner who is unable to function in ‘normal’ society. Notably, these personas are inherently male.
You’re not likely to associate autism with females at the mere mention of the term. Chances are you wouldn’t think of someone like myself, particular about my highlights, skilled in navigating the intricate social dynamics of female-centric atmospheres, and an adept baker of chocolate cakes for celebrations.
It wasn’t until I hit the age of 34 that I received my diagnosis. I found myself coming to terms with what it truly implied, amidst a certain level of unease. Living in a society obsessed with labeling identities, be it based on gender, diagnosis, ideology, culture, nationality, or others, this diagnosis felt like another label I needed to tread carefully around. It felt analogous to a ticking parcel warmly wrapped, which I happened to stare at for a considerable time. It may potentially infuse logical context into aspects of my life and personality that seemed out of place, and shed light on why I occasionally find certain aspects difficult, which others find seemingly natural.
Many times in my life I’ve been labelled as “distant” or even discourteous, not showing the normal emotional reactions in a variety of situations. One ex-partner even viewed me as un-ladylike, in spite of my feminine appearance, as if I had not passed some odd examination. I often found myself in trouble as a child and teenager for verbally expressing observations that, according to societal etiquette, should be kept silent. For instance, I remember being disciplined at the age of 10, when I innocently asked why my grandmother never appeared to say anything kind to anyone, which left me frustrated and perplexed by this unfair punishment when my question was based in truth. The subtle distinctions and complexities of female friendships have always seemed like they were communicated in a language that required considerable struggle and research for me to understand. I felt the need to tone down my natural instincts and behaviour to adapt, to function in a professional setting, and to achieve success.
The term “masking” is used in scientific literature to describe this phenomenon. Women on the autism spectrum are said to use it more often, or more effectively, as a survival strategy to navigate new social hierarchies. It usually involves closely observing the behaviour that is expected, particularly for women, and emulating these expectations to make social interactions go smoothly.
However, this label can also be dangerous. It could lead to a simplification of my identity. While a diagnosis can offer insight into your life and help communicate aspects of your identity to others, it could also be misused to justify limitations, to hide, or even to weaponise against yourself or others.
Autism is classified as a neurodevelopmental disorder, characterised by distinctive brain activity in those diagnosed. However, in regions like the UK and Ireland, the diagnosis is not typically based on any physical examination. Rather, it’s done over multiple sessions with a clinical psychologist using a descriptive Q&A format, drawing on the person’s personal experiences and, where possible, input from close friends or family who have known the person since childhood. No one attempted to scan my brain.
Laura Kennedy: The sum of our parts.
Acknowledged writer and thinker, as well as a friend to this programme, Laura Kennedy, is here to promote her debut book, Some of Our Parts. The book, a blend of memoir and probing examination of identity, is articulated through the scope of the various labels that impact our existence. Kennedy identifies with a variety of labels including ‘feminist’, ‘Irish’, ‘neurodiverse’, and ‘underprivileged’, and asserts that these labels only reveal a fragment of a far more intricate narrative. During her discussion with Róisín Ingle, Kennedy reflects on the various labels that she has identified with or rebelled against throughout the course of her life. She contemplates her upbringing in Limerick, her mental health battles, and her progression to a career as a beauty editor and established writer, dismantling the labels she has received, disregarded or relinquished in the process.
Experts hypothesise that if one’s functional brain organisation were evaluated (likely after an exasperatingly long wait due to our deficient healthcare system), the findings would reveal a structure distinct from what is generally termed a “neurotypical individual”. This is merely conjecture, however.
As more in-depth research, consciousness and concern grow, the diagnostic parameters for numerous types of neurodiversity expand and, consequently, a wider span of individuals identify themselves as part of this group. There are two main perspectives in the public conversation about the rise in autism diagnoses in both children (an increase of 787 per cent from 1998 to 2018) and adults. Some view this as an indication of progress, as there are now more experts and easier access to diagnosis than at any previous time.
This stance implies that the prevalence of autism and ADHD has always been.. people were merely contending with these conditions without a diagnosis, insight into neurodiversity, or support. Conversely, others suggest that this surge is a by-product of a profitable neurodiversity industry; that medical professionals, influenced by both professional and financial factors, are motivated to pathologise an expanding range of traits, behaviours, preferences, and tendencies as autism, ADHD, or in some instances, both.
Upon reaching out to a couple of Dublin-based clinics about their diagnostic procedure, both revealed that the overwhelming majority of those who seek a diagnosis receive one. Such information initially transformed my tranquility into discomfort. This is emphasised by the extended waiting period for assessments and diagnoses in the public health sector, sometimes spanning years not months. This affects children immensely, as their social growth, education, and health may suffer due to these delays. Such circumstances have fashioned an unequal system where access to diagnosis is influenced more by financial capability than necessity. Even in the private sector, there is often a long wait for assessment, and the cost can soar into the thousands, making a diagnosis a serious consideration not made on a whim.
Mostly, autism is identified during childhood, hence those adults that missed a diagnosis probably have had to navigate social, functional, behavioural, medical and other challenges all their lives. According to the Irish charity As I Am, about 85 per cent of Ireland’s autistic population is either unemployed or underemployed. The public’s understanding of autism is insufficient. Many individuals who grow up feeling branded as weird, socially inept, or challenging may not realise they could be autistic. Awareness and recognition of the signs of autism, particularly in women, is only beginning to penetrate public discourse.
The gradual change in diagnostic criteria, mostly due to clinicians and researchers acknowledging the differences in manifestation in women, is now taking shape. Representing an autistic man as a stereotyped individual with creased trousers is unfair and inadequately portrays an autistic woman. Given that understanding and knowledge about autism, particularly in women, is now blooming, many potential autistic adults, upon thorough research, decide not to undergo the costly, lengthy and stressful diagnosis process.
Consequently, it is not surprising that many adults who get assessed receive a diagnosis. However, there are fears that individuals who don’t suffer profoundly from severe autism features such as extreme sensitivity to sensory stimuli, struggles with social norms and hierarchies, paralysing anxiety in group settings or selective or non-selective mutism, may access a diagnosis before others.
Indeed, it is plausible that those with struggles that make traditional job-functioning, navigating complex healthcare systems, or self-advocacy challenging, could be missing a diagnosis while individuals like myself, who are comparatively well-adjusted, have the option to utilise or conceal this label, as I have done since my diagnosis, and continue to manage reasonably well regardless.
Could the autistic label, when attributed to an individual like myself, somehow belittle or complicate the situation for autistics who are unable to mask or “blend in”? For those who can’t conveniently adapt to gain advantage or even simply get by when necessary? Possibly.
Post-diagnosis, there exists the appeal to use this newfound label to reframe one’s whole life in its context. I have chosen not to follow this path. I perceive it as illustrative, not dictatorial, primarily because I have the privilege to. It’s just another label to consider, to be enlightened by and about, within a society engrossed with them. Just one more.
Laura Kennedy’s book, Some of Our Parts: Why We Are More than the Labels We Live By, is brought to you by Eriu.