As a parent, I have been reflecting on how transition is a challenging time for anyone.
My youngest child recently moved up to ‘big school’ and this involved a complete shift in everything that she knew and was comfortable with. She felt excited and terrified, lost and lonely, even though her new school is larger, with more pupils. This is evidently much more intense for people with autism and it can be a hugely worrying time for families.
Dr Jeremy Tudway: “My heartfelt wish is to change the language used to reduce the negative focus on the person being ‘a problem’”
How and what are the core elements of this experience? Change, the unknown, new rules, new expectations. The list goes on. While change is inevitable, how we adjust to this is crucial to reducing uncertainty and building resilience.
Communication is the centre of change
As with so much of what I see, communication is the centre of preparing for change because it enables people to predict events and manage them better.
How we communicate is key and understanding how others communicate is hugely important, yet often overlooked because of assumption. We assume that people communicate in the same way we do, we assume that people understand what we are saying unless they say otherwise (ever tried following directions from someone when you are in an unfamiliar area?)
Professionals are as likely to fall foul of this as much as everyone else, despite their training and ‘specialism’; and sometimes they need to be reminded!
When I ask autistic people about their own experience, the most important yet difficult obstacles to overcome are barriers and a lack of acceptance. It is only by changing perceptions that the challenges presented to them by different environments can become manageable. It really doesn’t seem like much to ask, if you will pardon the pun, because communicating in an accessible way reduces anxiety and builds confidence.
Use ‘behaviours of distress’
My heartfelt wish is to change the language used to reduce the negative focus on the person being ‘a problem’, from ‘challenging behaviour/behaviours that challenge’ to ‘behaviours of distress’, as it is the failure of the world to understand what need is not being met as opposed to the person themself who poses a challenge to be ‘managed’.
In my work life I have many conversations about traumatic experiences, mainly those that are characteristically unpredictable, hence the intensity of the memories and distress. An increasingly disturbing theme is that these experiences are more common for people with autism and their families. One conversation I have had more recently reflects how unnecessarily traumatic transition can be for people with autism. I deliberately use the term unnecessary, as many of the triggers and points for focus are both well-known and have been part of the person’s life throughout childhood.
Clearly, much of this trauma is avoidable at best and can be minimised at worst; so why are we not learning to do things differently? The most upsetting aspect of the conversation was that the person’s mother was excluded from meetings and decision-making about her child. Professional documents and plans were neither accurate nor sense-checked, and what should have been a first step on the road to supported independent living became mired in difficulty.
‘The best experience ever’
On a positive note, I also spoke to a colleague who now works for Dimensions about his transition from a truly negative school experience into residential college and then supported living. Having been bullied, then excluded from mainstream school, the move to a residential college where his needs were understood and he could meet peers and professionals who found ways to work alongside him was, in his words, “the best experience ever”.
As for the transition into supported living: “It was exciting, but worrying”, and developing new relationships and habits was difficult. What could have been better in his opinion? “People sharing what they had learned about me.” This is such a simple solution: communicating, sharing knowledge and making those small, yet highly significant changes.
The term, ‘reasonable adjustments’ is one that I find myself repeating over again, when in reality this is actually about embracing the one thing that characterises humans. In short: all people are like all other people in the same way that all people are like some people, and some people are like no other people! Personalisation and acceptance is the key.
Dr Jeremy Tudway is clinical director at Dimensions
For more information about transitions please read the Dimensions free guide: https://dimensions-uk.org/wp-content/uploads/Transition-your-childs-journey-into-adult-services.pdf
