Strategies for going out
We discussed the experiences parents had of taking their children out to various places to do different things. Here we focus on how parents managed...
Fears, anxieties, sensory issues and meltdowns
Not all children on the autism spectrum experience above average degrees of fear and anxiety, but many parents described their children’s fears and anxieties about various things and these are discussed here. Fears were individual to each child and included loud noises, bright lights, windy and stormy weather and the possibility of being hit by falling trees, meteorites or catching diseases on buses. Unfamiliar things and people, strong smells and particular textures could also upset and disorientate children. Often parents knew what was likely to affect their children and could reassure them, though some children tended to keep their fears hidden, particularly at school. The intensity of some children’s anxiety and fear made everyday life difficult for the children and their families. Some children couldn’t face going outside, others were upset if they had to go shopping or do something that involved being in a crowd (see ‘Going out‘).
Rachel describes a trip to the shoe shop with her sons.
Food and eating was a major cause of anxiety for a few of the children who were afraid of choking and so avoided anything chewy or lumpy. One mother, for example, described how her son ‘picks the edges of things, makes little piles out of the food and eventually eats something’ because he was so scared of choking. Doing things like cutting the ends off chips made mealtimes a lengthy process. Another child stopped eating solid food altogether for months because of a similar fear.
Jacqui’s son Ben is a born worrier while Joe is like Billy Whizz.
Some children had nightmares or night terrors which distressed them and their parents (see ‘Eating and sleeping‘). Some needed to be physically reassured after waking up in the night and some slept with their parents. Some of the children internalised their fears while others became aggressive (see section on ‘Meltdowns’ below). One mother knew her son was anxious when he went to the toilet ‘ten times in half an hour’.
Rachels sons both have horrendous nightmares.
A few parents said their grown-up children had self harmed at certain points in their lives, particularly during adolescence. One boy of 15 for example had started head banging at that point in his life, which his mother thought was caused by frustration.
Meltdowns
Some parents explained how behavioural difficulties could be caused by fear and anxiety. Some children could go into ‘meltdown’ and become aggressive because they found themselves in social situations they couldnt handle or understand. For example, one boy was terrified of children. ‘He didn’t understand them and he was scared of them. He would go and try and make friends, he would annoy them and then he would feel threatened and would whack them.’ Other children could be destructive when they were angry.
The trigger for the meltdown could be something like an unexpected change in routine or something that had happened months before that the child had remembered. One couple talked about their son’s memory of events that had happened years earlier but which still upset him.
Nick and Vikki find their son’s tantrum’s difficult to control now he has grown older.
Helen describes her son’s meltdowns as like a monster exploding.
Jeanines son became uncontrollably angry when he missed Dr Who because they were on holiday.
Parents found managing their children’s meltdowns difficult because they were hard to predict. They would often have to physically restrain their children which became harder as the children grew bigger. One boy was on a very low dose of medication to control his behaviour and while this worked quite effectively, he was still unpredictable (see ‘Medical and dietary interventions‘). Other children’s behaviour improved as they grew older and learnt to manage everyday life more effectively (see ‘Positive changes over time‘).
Sensory issues
People with autism may be sensitive to sight, sound, smell, touch or taste. Many children were extremely sensitive to all sorts of loud sounds including alarm bells, hoovers, lawn mowers, and background sounds from radio and the TV all of which could overwhelm or distract them. One child wore earmuffs constantly to reduce the level of sound he could hear. Wearing special lenses (known as Irlen lenses) helps Kirstens son to focus his vision.
Kirsten’s son wears coloured glasses to help his concentration.
A few children were hyposensitive (had low sensitivity) to pain. As one mother said about her son, ‘He had no sense of pain so he had no sense of danger; he was into fires, he was into gas cookers’. Other children were hypersensitive (had a high sensitivity) to pain and could not bear the feel of different textures on their skin. As one mother said, clothes had to be ‘soft, no zips and no hard waistbands’. Some children would not wear labels in clothes or socks and one child hadnt worn shoes for three years.
Jacqui has to cut the label off clothes for Ben when she buys them in the shop.
Nicole has hypersensitive hearing which can cause her anxiety.
Having nails or hair cut was also difficult for some children. The smell of food in restaurants was too strong for one boy while another boy disliked the ‘bubbly feeling’ of toothpaste and his mother had got some bicarbonate of soda as it was better than nothing.
Several parents talked about how their children ‘stimmed’ (repetitive stereotypical behaviour) this could include: flapping their hands, touching things, sucking things, spinning round in circles or constantly turning lights on and off. Stimming could be a mechanism to calm the children if they were anxious, it could be to tune out something the child couldnt cope with at a particular time, it could be related to a sensory fascination with an object or just for want of being able to think of anything else to do. One mother described how her son had what he called ‘habits’, one of which was constantly licking his fingers and then touching things.
Some children didn’t like certain food textures or different colours of food (see ‘Eating and sleeping‘) and one boy used people’s shape, colours and smell to know how they were feeling and could smell his mother’s emotions.
Reducing anxiety
Some parents were highly adept at supporting their children with managing their fears, anxieties and stress. They tried to understand how their children thought about things, preparing the children well in advance of different activities and trying to pre-empt any potentially difficult situations. Some parents used wall planners and charts so that their children knew what they would be doing each day and followed this rigidly. Other parents tried not to become too routine-bound but didn’t always succeed.
Nikki and Mark have tried not to create routines for Tyler.
One mother fetched her son home early from school to miss the crowds of children at home time, while another found taking her son out in the car calmed him down. Reducing the number of people visiting the house was another strategy some parents used. One boy, for example, had a sign on his door allowing only one person at a time into his room. His mother said he would prefer only one person in the house at a time. Parents also changed their expectations for their children in order to help them manage their anxieties. It was no use expecting them to enjoy children’s parties or ride a bicycle if they couldn’t cope with these activities.
Nuala describes how they have elaborate plans for everything and simply don’t change the plan.
Jane describes how she tries to help her son feel balanced and learn to recognise his stress.
Some parents talked about how the anxieties changed over time. They could help their children learn to manage a particular anxiety and then a new anxiety would come along. Several parents described how their children became less anxious as they grew older.
Fears, anxieties and sensory issues were an important part of daily life for most of the children; they are common among people on the autism spectrum. While these could be challenging for the child/ren and her/his family, many families managed them successfully. Difficulties in communication are also a characteristic of autism – see ‘Communication; understandings‘.
Special interests and routines
Having 'special interests', 'specialist subjects' or 'must do's' is also a characteristic of autism. Some children's special interests included tearing paper into tiny pieces, trains,...