Autism and Embracing Change-A Personal Perspective

The Autistic Carer-I am Wired4Autism !

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Nov 9, 2021

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Sometimes when I have disclosed my autism diagnosis to former work colleagues, I have encountered the following response : “you can’t be autistic, as you can cope with change ! “ What these people have failed to understand is that as an autistic in my mid-fifties, I have both developed coping strategies and, reluctantly at times, come to accept that life is unpredictable and filled with sudden and unexpected change. They have also not recognised that like a swan on rough water, I may seem serene on the surface, but there is a lot of hidden activity beneath!

Many autistics find any kind of change difficult, resulting in heightened anxiety and sensory sensitivities. Consequently, the world may seem unpredictable, frightening and confusing. To try and make sense amidst such uncertainty, many autistic people seek comfort in routines and rituals so that they know what is most likely to happen throughout the day. Strategies include always following the same route to and from home or school, or a strict, rigid morning routine.

Transitioning from one activity or environment to another , or big events and special occasions may create significant change and upheaval, leading to anxiety and panic. In order to help prepare for changes, daily timetables or schedules can bring structure and routine to planned changes.

In order to maintain order in our confusing and often disordered world, many autistics take the need for routine and familiarity further. They may come across to others as “controlling” their environment through insistence on rigid preferences around food, clothing or everyday objects. Sometimes routines can become almost ritualistic in nature, following a precise pattern or sequence with intense interest to detail.

These rituals can be verbal in nature, with the autistic person repeatedly asking the same question or reciting the same sentence or quotes , for a specific answer or response. I ,for example, will often quote from song lyrics or movie lines when placed in a stressful or unpredictable situation or use masking or mimicry to offset anxiety. It is often incorrectly stated that autistics do not possess a sense of humour, yet I use humour and wit as tools on a daily basis to mask my anxiety!

Some autistic individuals take this need for routine and control further, and engage in compulsive behaviour such as ritualistic hand washing or repeatedly switching lights on and off a set number of times before moving onto a new activity or environment.

However, inevitably, not every change can be planned or prepared for. Indeed, at times, as an American might say, “life throws us a curve ball!” These unexpected , dramatic or traumatic changes can be extremely debilitating and unsettling, but through support, self management or resilience gathered through personal experience, autistic people can prepare for changes in advance. Some autistics, like myself, are sometimes more able to embrace traumatic changes, such as severe illness of a loved one, than more subtle unexpected changes such as Doctor Who running 10 minutes late !

So how can parents, carers or autistic individuals themselves develop strategies to deal with change?

Proactivity is the key strategy to embracing change. For example, if a close friend, teacher or colleague announces that they are moving to another location or emigrating, try to gather as much information as to timescale so that a planned strategy can be developed. Included here also is introducing change as early as possible. For example if an autistic individual becomes very set in a particular route to school or work, it is essential that small controlled changes are introduced, such as very slight or short deviations in route, to sow resilience for those unexpected times when traffic may need to be diverted. For children and young people, being introduced to new teacher and class for short periods before the end of an academic year can make transitions to different classes or teaching establishments mush less traumatic.

For big changes such as Christmas or moving house, the use of calendars to count down the days can make these changes easier, especially if accompanied by other incremental changes such as boxing up a few items at a time, or introducing Christmas decorations over a period of days, rather than going from a bare house to full on Christmas mode overnight!

It is also important to consider how change, whether planned or unplanned is communicated. For those individuals who are able to respond to verbal notification, it is essential that clear, precise phrases are used to describe the change and that sufficient time is allocated for the autistic person to process the change and respond. Many autistics may find gestures and facial expressions confusing, so limiting these forms of communication may help them to process information about the change.

Visual supports, such as schedule cards or objects of reference can also be used to supplement or reinforce the communication of change to an autistic individual. Even for those without any apparent difficulties in verbal communication, these can still be useful tools as in times of extreme stress or anxiety our ability to process information verbally is impaired.

It is also important to involve the right people, especially if transitioning to a new educational establishment or care setting. In these circumstances both current and future staff need to be fully involved in helping to facilitate these changes, with the autistic individual being central to all of the proposed and planned changes through a committed person-centred approach.

Many autistic people find sequencing to be difficult, particularly around abstract concepts such as time , especially when moving on from an activity or waiting for another to start. Consequently, unstructured time can be particularly challenging, often resulting in extreme anxiety and behavioural changes. In these circumstances visual timetables, now and next boards and timers can be very beneficial. Whenever possible, waiting times between activities should be as short as possible. When this may not always be the case, such as when dining out, it may be preferable to pre-book a time , avoid busy periods or ask the venue to text when meal is ready so that a distraction technique such as listening to music in the car or a short walk can be implemented during the period of waiting.

In summary, many autistic individuals may be resistant , or become anxious due to change, especially unplanned or unexpected change. However, change is an inevitable part of life, and some changes can be very much for the better. It is essential that planned change is introduced into the daily routine in the lives of all autistic individuals so that they can experience new opportunities and develop resilience for those sudden and unexpected changes that will inevitably come their way. Their ability to embrace change is also developed through life experiences and a gradual awareness and acceptance that change, good and bad, is an essential part of all of our lives.