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On 19 June, I attended the third online webinar in the 2020 Autism Expert Series offered by the Autism Resource Centre Learning Academy. This webinar was titled ‘Stress Management in Autism’ and was presented by Dr Peter Vermeulen. This insightful presentation explored why individuals on the spectrum experience more stress, followed by strategies on how to create an autism-friendly stress management plan.
What is stress?
Dr Peter Vermeulen began by defining psychological stress as a collection of reactions to a stressor. Stressors are things which get us out of balance. Stressors can be real things actually happening to us, or they can be ideas about things that could happen to us. Reactions to a stressor can be physical, emotional, cognitive, or behavioural.
According to Dr Hans Selye, stress can be negative or positive. Stress can cause dysfunction, which is a bad type of stress known as distress. However, stress can sometimes provide a challenge that does not cause dysfunction and may even improve our function, which is a good type of stress known as eustress. When we have either not enough stress or too much stress, it leads to distress and low levels of wellbeing. When we have just enough stress, it leads to eustress and optimal levels of wellbeing. The aim of having a stress management plan is to seek the right balance between the demands and the resources to cope with demands.
Demands can come from outside or inside. External stressors refer to certain life events that happen to us. Examples of external stressors include the loss of our beloved, too much work, loss of income, and COVID-19. Internal stressors refer to certain ideas that affect the way we see ourselves. Examples of internal stressors include the thoughts, ‘I will fail,’ ‘I’m not attractive,’ ‘They will fire me,’ and, ‘I will get sick.’ These thoughts and feelings are subjective and personal, which is why the same life event can cause stress in one person but not another.
Likewise, resources can come from outside or inside. External resources refer to support from other things and people that help us to cope with the demands. Examples of external resources include help from others, money, and available tools. Internal resources refer to how strong we are and how well we can take on the demands, otherwise known as resilience. Examples of internal resources include health, problem solving skills, and intelligence.
When there is a balance between demands and resources, we face eustress or good stress. When demands and resources are out of balance, we face distress or bad stress. Coping is the process of trying to restore this balance. There are three coping strategies, which form the ingredients for a stress management plan.
A problem-focused strategy involves ‘fight’ by changing the causes of stress, or ‘flight’ by escaping the causes of stress.
An emotion-focused strategy involves changing our feelings towards the causes of stress.
An appraisal-focused strategy involves thinking about the causes of stress in a more positive way, adopting a ‘glass half-full’ instead of ‘glass half-empty’ mentality.
Why do people with autism experience more stress?
Dr Peter Vermeulen observed that autism intensifies the daily concerns, leading to a pile up of stressors. Individuals with autism have stressors specific to autism on top of the 'normal' demands that give stress to all people. Examples of these autism-specific stressors include sensory issues, social demands, misunderstandings in communication, changes and transitions, disruption of routines / rituals / stereotypes, unpleasant events, and activities that are too difficult or not interesting.
Moreover, individuals on the spectrum may encounter additional stress, because their autistic thinking is not fit very well to cope with our volatile, uncertain, complex, and ambiguous (VUCA) world. Our brains have generally become an expert on using context for making quick and smart guesses. On the other hand, individuals with autism have a reduced ability to use the context spontaneously when giving meaning to the world, otherwise known as context blindness in autism. They have absolute thinking in a relative world.
One example that Dr Peter Vermeulen gave was a scene from the movie ‘Rain Man’, in which the traffic light changed from green to red while a man was halfway through crossing the street. The man with autism interpreted the red traffic light to literally mean ‘stop’, when in this context it could mean ‘go back’ or ‘don’t stop’. Another example that Dr Peter Vermeulen gave was that after a few visits to a fast food restaurant, a child might get accustomed to the routine of eating a burger, fries, drinks, and finally a dessert. In a context in which the family had no time for dessert, the child with autism would face a lot of stress. Having predictability is important, because uncertainty drives anxiety and sensory issues in autism. This was found in a research study titled ‘The relationship between intolerance of uncertainty, sensory sensitivities, and anxiety in autistic and typically developing children’. Dr Peter Vermeulen also elaborated on this topic in his previous webinar titled ‘Are Sensory Issues in Autism Sensory? Autism, The Predictive Mind and Sensory Processing’. In essence, uncertainty leads to increased levels of stress in individuals with autism.
Dr Peter Vermeulen shared about a research study titled ‘Enhanced cortisol response to stress in children in autism’. The researchers objectively measured the amount of the stress hormone cortisol in the saliva of children with and without autism. Measurements were taken before a stress event, 20 minutes after a stress event, and 40 minutes after a stress event. They found that whereas control participants without autism had cortisol levels that returned to baseline 20 minutes after a stress event, children with autism had higher peak cortisol response and prolonged duration of cortisol response. This indicates that children with autism face more stress than children without autism, and one implication is that we cannot expect children with autism to resume functioning at normal levels again soon after a meltdown as they need more time to recover.
Stress can also pile up throughout the day for children with autism. Dr Peter Vermeulen illustrated this using the metaphor of a stress bucket being filled up with water. We often focus on meltdowns, moments where children encounter too much stress and their stress buckets overflow. However, we should also reflect on what previously happened throughout the day which led to the pile up of stress.
Illustration 1. In lessons, children generally experience an increase in stress due to the concentration and energy required. However, during breaks, children without autism get to destress as it is a time of freedom and fun for them. On the other hand, during breaks, children with autism experience an increase in stress as there are sensory and social demands from being in crowds. When they return to lessons, they experience a further increase in stress, which might lead to a meltdown.
Illustration 2. When going to school, children generally experience an increase in stress due to the concentration and energy required. However, when going home, children without autism get to destress as they have fun sitting on a bus and chatting with their peers. On the other hand, when going home, children with autism experience an increase in stress as there is a lot of unpredictability since the seats and routes are not fixed. When they return home and need to do their homework, they experience a further increase in stress, which might lead to a meltdown.
What are some strategies for helping people with autism cope with stress?
To avoid unpredictability and improvised responses, we need to create stress management plans. It is important to make proper assessments before making a plan. What are the stressors? What are the signals? How does the person cope? It is especially important for us to make such assessment for individuals with autism who are non-verbal. There are various ways to analyse stress and stressors.
Fill in a diary
Use a stress-thermometer, asking the child to place a colour-coded sticker next to school schedule e.g. If a child places more green (good) or yellow (uncomfortable) stickers in the morning, and more red (stressed) stickers in the afternoon, it indicates that there is a pattern in which he gets tired and needs more breaks in the afternoon
Register stress behaviours or signs of distress in autism e.g. Increased rigidity, increased resistance against changing, more signs of autism such as stimming, challenging behaviours, and self-injurious behaviours
Use questionnaires e.g. Groden et al. (2001)’s Stress Survey Schedule and Vermeulen (2015)’s Autism-Stress Inventory
Take physiological measures such as heart rhythm and cortisol e.g. Using smart phones and smart watches
Dr Peter Vermeulen shared that an autism friendly environment provides certainty and reduces stress through helping the child gain predictability, understanding, and knowledge of the context. A good autism stress management plan has two tracks, the environment and the person, which correspond to external and internal factors. He noted that we should focus on the changing the environment when the child is experiencing high levels of stress and is not open to learning. However, it is sometimes not possible to change the environment, and we are also unable to change the child’s environment throughout his life. Therefore, we should also focus on changing the person, equipping the child with coping strategies and giving him a sense of control over various stressors.
THE ENVIRONMENT
Reduce and eliminate autism stressors
Sensory adaptations
Adapted, concrete communication to reduce misunderstanding
Announce changes and give time to change
Clarify the vague and hidden social rules
Make tasks easier and adapt your expectations
Monitor the challenges / demands
Offer support
All kinds of tools that make the world more predictable e.g. Day schedules
All kinds of tools to navigate the world e.g. Social Stories
Buddies
Doing things together with a support person
THE PERSON
Build up resilience through healthy living habits
Balanced food
Good sleep
Physical exercise and sport, as physical activities lower cortisol level and anxiety in people with autism
Teach problem-focused coping strategies via ‘fight’
Stress communication e.g. ‘Stop’ card which the child can raise
Use tools and organisers e.g. Brain in Hand app available in App Store and Google Play, with day schedules, solutions for everyday situations, and an anxiety response monitoring system with a support worker on standby
Ask for help e.g. Dr June Groden’s picture rehearsal technique which combines social scripts with pictures
Teach problem-focused coping strategies via ‘flight’
Escape scenario e.g. ‘When I get angry, I don’t hit, kick, or yell. I go to the support worker in the office at the corridor. I talk about what made me angry.’
Teach emotion-focused coping strategies via stress reducing activities, where the criterion is that whatever the child does to feel better is fine as long as it does not harm himself, other people, or material
Allocated time for relaxation to address the mind-body connection e.g. relaxation breathing, progressive muscle relaxation
Favourite free time activities
Stereotyped activities and behaviours e.g. Stimming
Pets and other animals
Deep pressure and weighted vests for sensory input e.g. Dr Temple Grandin’s squeeze machine
Mindfulness, which has positive effects, but needs autism friendly adaptations e.g. Omitting cognitive elements such as examining the content of one’s thoughts, and addressing information processing deficits by avoiding the use of figurative and ambiguous language
Psycho-education on stress
Teach autistic individuals to recognise stress and use appropriate strategies, if the child has an appropriate level of cognition e.g. ‘Totally Chill: My Complete Guide to Staying Cool’ fun workbook written by Dr Christopher Lynch
All in all, my main takeaway was that individuals with autism may be more susceptible to stress due to their autism-specific stressors and autistic thinking. This makes it crucial for us to analyse their stressors, then devise an autism-friendly stress management plan that can help to restore the balance between demands and resources. We can follow a two-pronged approach, addressing external factors in the environment and internal factors within the person. In particular, Dr Peter Vermeulen emphasised the effectiveness of emotion-focused coping strategies such as relaxation and mindfulness activities. For instance, he suggested that children with autism should start their day with breathing exercises, as some children wake up already feeling stressed and proceed to have their stress pile up throughout the day. Indeed, in my personal experience interning at early intervention centres, breathing, yoga, and meditation can be very calming and beneficial for children with and without autism.
Free relaxation and mindfulness videos on YouTube:
All blogposts on 2020 Autism Expert Series:
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