The number of individuals diagnosed with Autism Spectrum Disorder (ASD) is certainly not dwindling away and the average global rate of one per cent has more than doubled in recent epidemiological studies.
This may be stemming from an enhanced awareness and a deeper understanding of the condition rather than a significant increase in occurrences.
However, there is a link between ASD and having children later on in life. Another contributing factor may be the increased survival rate of premature babies.
The conceptualisation of autism as existing on a spectrum from severe to high functioning shifts the emphasis of being diagnosed with ASD from having a disorder to learning about and acknowledging a different aspect of our human existence, an alternative way of being deserving of acceptance, support and integration.
The main disability of ASD is rooted in brain development and primarily manifests itself in the social domain in terms of impairments in connection and communication with others, and restricted and repetitive behaviours.
The acquired level of reciprocal social skills and gestural interactions is usually incomplete. Eye contact, interactive smiling, attachment to others, subtle interpersonal skills that foster friendships, and involvement in back-and-forth conversations can all be affected to varying degrees. Deficits in the development and usage of language; irritability and temper tantrums; altered sensitivity to stimuli; hyperactivity; and decreased attention span; and (in more pronounced forms of the condition) aggression and self-injurious behaviours; have also been associated with ASD.
Of note is the decreased ability to understand and interpret the feelings, motivations and behaviours of other persons. In no way should this be construed as a lack of desire or need for social connectedness, but persons with ASD may struggle with what matters most to initiate and nourish long-term relationships.
To a greater or lesser extent, persons with ASD are dependent on the attitude and generosity of others to relate. They are liable to be shunned by or rejected by those who expect them to exhibit ordinary interpersonal exchange. Empathy is not a straightforward option for people with ASD and, ironically, others may respond to this disability by choosing not to be empathic when they are more or less equipped to exercise compassion.
Transition and change are particularly challenging for individuals with ASD in the context of a limited repertoire of activities and behaviours, and preferred sameness. The emotional and behavioural responses to shifts in schedule, less familiar environments or misunderstood actions of others, may be perceived as unreasonable or abrupt by those with limited insight into the nature of ASD.
Transition and change are particularly challenging for individuals with ASD in the context of a limited repertoire of activities and behaviours, and preferred sameness
Potential or real aggression is better managed when, in unfavourable circumstances, it is anticipated, prevented or skilfully addressed through a more balanced perspective of ASD, rather than pointing all fingers at the individual as if behaviours occur in a vacuum, and external factors do not exist and cannot be favourably tuned.
When one considers the ability to form and sustain relationships, that is social competence, as pivotal to human functioning, the disadvantage posed by ASD merits special considerations, coupled by a concerted effort to annihilate the impact of such a disability on the person and immediate others.
The increased awareness of diversity and the aspiration to embrace it are certainly steps in the right direction. Understandably, the nature and varying severity of ASD warrants specific strategies that persistently put the individual with the condition at the centre of planning and execution of all approaches aiming at optimal integration with society.
Autonomy is a complex notion that has been applied to different circumstances and for different reasons and goals. It is certainly wider than the basic concept of self-governance and targets key human attributes such as dignity, freedom, choice, the development of one’s inherent potential, and the determination of one’s life trajectory, according to individual preferences, targets and self-identity.
Some may harbour the prejudice that people with ASD, as a result of their dependence on others for certain tasks, completely lack the ability to think for themselves, develop preferences and commit to certain principles. In fact, the main focus for interventions for ASD is mostly behavioural, with an emphasis on an instructional strategy for conduct modification according to socially approved rules.
While it is true that verbal expression is not the forte of individuals with ASD, who may also prioritise values differently, their potential for developing a degree of autonomy is frequently ignored or conflated with decisions taken by others under the umbrella of the best interests of persons with ASD. This tends to give rise to unjustified interference that fails to foster autonomous living to varying degrees depending on the needs of the individual.
From a psychological perspective, autonomy is a basic need for all human beings, including all those with ASD, who inherently are less prone to be contaminated by the ideas of others, can remain authentic to their desired choices more easily and thus have potential to be autonomous.
Inclusive education of individuals with ASD warrants a shift in attitude with full insight into the nature of their condition and needs, with an accent on their basic psychological need for autonomy. Parents of youngsters with ASD should be involved all the time, with their autonomy also highlighted when key decisions impacting on the education of their children are made.
Children with ASD have a legal right to mainstream education on the same level of all other children. Slippery-slope judgements that result in excluding them from school for extended periods − on the basis of a ‘damage limitation’ approach for behaviours associated with their disability − are completely unacceptable, reflecting a misunderstanding of the foundations of inclusion and social integration.
Anthony Dimech is a consultant psychiatrist reading for a PhD in autonomy, self-regulation and addiction.