Learning Disability Today
Supporting professionals working in learning disability and autism services

Breaking the mould: understanding the diverse experiences of autism

In recent years, a remarkable transformation has taken place in our collective awareness and understanding of autism. Yet, despite the progress made, persistent misconceptions and myths continue to cast a shadow on the true nature of autism. This unfortunate reality not only perpetuates stigma, misrepresentation and alienation, but also reveals deep-rooted flaws within the very systems established to support autistic people.

In the UK alone it is estimated that one in 100 people are autistic, and some experts suggest that the prevalence may be even higher. Without addressing these gaps in knowledge and support we are failing a significant part of the population. By unravelling the tangled webs of misinformation surrounding autism, we can foster greater understanding and inclusivity to ultimately dismantle their systemic consequences.

“Autism predominantly affects males”

The misguided assumption that autism predominantly affects boys provides the stereotypical image of an autistic person as that of a young, white, male-presenting individual. Whilst autism is more readily recognised in boys, this does not mean that girls are less likely to be autistic.

The diagnostic criteria for autism does not explicitly discriminate based on gender. Research points to autism manifesting differently across gender identities, which can lead to autistic girls and women not getting diagnosed as early as boys and men – if they are diagnosed at all.

Autistic girls may often not exhibit the “classic” signs of autism, and many learn to camouflage from a young age, using compensatory behaviours to mask any social challenges. This tendency to exhibit behaviour that is considered more “socially acceptable” contributes to the underdiagnosis of autism in girls. For instance, although these individuals may exhibit clear signs of autism, such as stims (self-stimulatory behaviours) or challenges with social communication, they may appear withdrawn or passive, while boys may display more pronounced fixated interests or repetitive behaviours.

Their masking behaviours, which can help them “blend in” with their peers, can make it more challenging to identify their needs and receive a proper diagnosis. These masking behaviours may be learned more quickly by autistic girls than boys due to an increased focus on socially relevant stimuli from an early age.

This discrepancy in understanding autism in female-identifying individuals can be attributed to the fact that early studies predominantly focused on males. As a result, it has perpetuated a lack of clarity around whether there truly is a difference or not. This is further exacerbated by the inclusion of only female participants who fit the male profile of autism.

Also, autistic individuals are more likely to diverge from the gender assigned to them at birth, which further complicates the notion of autism as a predominantly male phenomenon. It was recently found that LGBTQIA+ youth who have been diagnosed as autistic were over 50% more likely to attempt suicide in the past year compared to LGBTQIA+ youth who had never received an autism diagnosis.

Not only does this highlight an urgent need to acknowledge the overlap between the two communities, but also for specialised care that includes LGBTQIA+ affirming support in addition to autism support, to prevent these crisis situations. While autism research and professional practice are gradually catching up with the realities faced by female-identifying autistic people, numerous barriers to diagnosis and support persist.

“Autistic people don’t feel empathy”

The prevailing belief in research has long suggested that autistic people have a deficit in the cognitive component of empathy known as theory of mind (ToM), referring to the ability to recognise and understand the thoughts and feelings of others – to “put oneself in another person’s shoes”.

It is commonly believed that autistic individuals struggle to identify the cues that indicate the inner experiences of others, often referred to as “mindblindness”. In contrast, neurotypical individuals are thought to possess a natural ability to seamlessly interpret, predict, and participate in social interactions by reading facial expressions, body language, and tone of voice.

However, the concept of the double empathy problem is often overlooked. Both parties involved in an interaction can experience difficulties in understanding one another, indicating that the issue is not solely one-sided. This perspective challenges the notion that autistic individuals lack empathy and instead requires a more nuanced understanding.

The problem lies in the distinction between “cognitive empathy” and “affective empathy”. Cognitive empathy refers to the ability to understand and infer the thoughts and feelings of others, while affective empathy involves the capacity to share and resonate with the emotions of others.

A recent study on empathy in autistic adolescents found similar empathetic behaviours between autistic and non-autistic girls and boys. However, autistic boys were found to focus on addressing the problem, whilst autistic girls were found to focus more on the emotion of the person in need. This may be due to well-developed social skills and camouflaging.

Autistic people may also express empathy differently by sharing examples of when they have been in a similar situation, often leading to others misunderstanding this as making the situation “about them”. Links have also been suggested between alexithymia – difficulties in recognising and describing one’s own emotions – and reduced emotional empathetic ability.

However, studies also assert that, while autistic individuals with concomitant alexithymia may experience empathy differently, this should not be mistaken for a lack of emotional empathy. The assumption of an empathy deficit is, therefore, flawed and can lead to distorted perceptions of autistic people.

“The linear nature of autism”

The belief that individuals can be categorised as “more” or “less” autistic is a highly reductive take. Contrary to popular belief, autism does not follow a linear spectrum. Lorna Wing, the psychiatrist who introduced the term and included it in the DSM, intended for it to represent a triad of three distinct spectra: social interaction, communication, and imagination. The purpose was to provide clarity and coherence to a complex and heterogeneous clinical phenomenon.

Misunderstanding the concept of autism as a linear progression has led to the use of terms like “high functioning”. However, individuals who may be assigned that term in one aspect of the triad may require significant support in another. Moreover, an individual’s functionality can fluctuate over the course of their life.

Since there is no definitive biomarker for autism, the notion of severity lacks scientific basis and accuracy. A deficit-based perspective generates more harm than good, particularly when it implies that other individuals are “low functioning”. Autistic traits such as narrow interests, repetitive actions, or heightened reactions to sensory stimuli can be very advantageous in work settings, for example. Viewing these traits as deficits is damaging and fails to acknowledge their potential benefits.

The topic becomes even more nuanced when discussing individuals with a dual diagnosis, which accounts for 91% of autistic children. Expecting consistency from autistic individuals and associating a diagnosis with a rigid set of “symptoms” is unproductive. The concept of a “spiky profile” offers a more accurate reflection of the human experience. Autistic individuals exhibit varying levels of ability across different domains. By recognising heterogeneity and considering individual differences in the presentation of autism, we can determine the most suitable and effective ways to provide support.

Dismantling barriers to support

The prevalence of these myths and misconceptions has far-reaching consequences for the support and wellbeing of autistic individuals. Early intervention and targeted support are crucial in enabling individuals to thrive and reach their full potential.

It can empower autistic individuals to navigate the world more effectively, maximise their strength, and lead fulfilling lives. To do this, it is imperative that we challenge the misinformation and thereby dismantle barriers to this support.

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