Declan Treanor stresses the importance of sharing your story.
Why is so much attention given to ASD in particular by the Trinity Disability Service?
Autism affects one in 68 children and is more common amongst boys, for whom its prevalence rate is one in 42 (Center for Disease Control & Prevention, 2016) .In the academic year (2018-2019) 137 students with AS were studying in Trinity. This represents a 52% increase since the previous academic year (86). One of the most significant impacts of AS is on an individual’s social functioning. Deficits in social interaction may range from abnormal social approach and failure to engage in typical ‘back and forth’ conversation to a total lack of initiation of social interaction. Individuals with AS may also present with deficits in developing and maintaining relationships. These may range from difficulties in adjusting behaviour to suit different social contexts to problems in making friends, and even to an apparent absence of interest in people. However, individuals with AS may have a desire for friendship and are often motivated to form friendships and relationships but do not know how. In this sense, the university environment can be extra tricky for someone on the spectrum.
What kind of work do you do with relation to ASD?
In my work, I primarily manage a caseload of autistic students (AS). Autism is referred to as a spectrum disorder because its level of severity varies widely across different individuals, with some requiring very substantial support and others requiring little formal support. The social communication difficulties, restricted interests, and repetitive behaviours that individuals with AS experience and exhibit are often unique to each as epitomised by the remark: “When you’ve met one person with autism, you’ve met one person with autism” So when we stop relying on the sociomedical model of disability and getting to know humans with AS we are starting to do our jobs. When I meet an autistic student, typically in a one to one meeting, I ask role-related questions using a coaching style trying to ascertain their awareness of themselves. In many ways, the needs assessment process is very robotic process following a defined procedure to elicit information from the individual requiring disability supports in college. The power dynamic is always in favour of the me the practitioner so there is a need to humanise the experience as much as possible while eliciting information to assist the reasonable accommodation process. I always start with them ‘Telling their story’ – I will ask them to tell me about themselves and about their understanding of AS and how they relate to their autistic traits, how AS impacts them and what positive qualities they can mention when thinking about AS. Interestingly most have little or no awareness of their AS and struggle to relate to or have any knowledge of this disability.
How do these stories go?
When I elicit personal stories, many will describe themselves as being different, not having friends, seeing themselves as intellectually superior or more intelligent, not understanding others lack of interest in their interests. Being bullied at school by peers always is mentioned, leading to isolation and ultimately, this trauma not being unaddressed. Sense of being excluded, being separated from others in school, resulting in loneliness and being seen as different. When pushed for some understanding of their autism, most will focus on the challenges they face and give textbook type descriptions of themselves. Very few have any positive stories to share or ever had anyone talk to them openly about their difference. Eliciting personal stories is essential as it builds on what is known and what is not said or understood. I deliberately ask them first off to talk about their difference so they can connect with themselves and this difference. This also helps people see themselves in a positive light and see that they are not so different. Introducing terms like neurodiversity and atypical allows for identifying with the self.
What are the challenges of this method?
This can be an awkward stage and can take several meetings as many don’t truly understand or relate to their AS identity. It is important to for them to recognise or refer to their condition when it is mostly expressed in negative terms. They will have had negative experiences, being treated differently, excluded from activities such as in the classroom or at home. Families may not have spoken about AS or what it is, so the awareness is limited.Moving from a transactional to a transformational way of working will require time, patience and to see everyone as unique and individual. Some will engage and connect with me but others will choose to not and find their own way. There is no right way but if and when the student can be supported they will be.