Before I had my own children I had a really rewarding job, working with families with pre-school children on the Autistic spectrum. As a parent myself, I now appreciate even more how challenging life was for these families and how valuable it must have been to have someone regularly visit their home to offer respite, problem solve together and help the children develop. My Masters dissertation investigated stress and early intervention in families of pre-school children with Autistic Spectrum disorder. The following stories are taken from case studies used in my dissertation.This is the first of 3 posts telling different families’ stories of the stresses they encountered and strategies for coping.
The Evans Family
The Evans Family are James, Rebecca, Charlotte (aged 8) and Alex (aged 4). Rebecca hadn’t worked since Alex’s birth and James was taking 9 months unpaid leave with the intention of returning when Alex started school. Alex received a diagnosis of Autism at the age of 2.
Causes of Stress
The most prominent and on-going issue for the Evans family was sleep. When Alex was first diagnosed, he slept for between 2-5 hours per night and would wander around being quite destructive during the time that he was awake. Medication (melatonin) helped tackle his sleep problems. It took a while to get the dosage right but eventually the correct level was maintained. Before this point, stress levels at bedtime were extremely high. James didn’t feel able to go out for an evening until Alex was asleep, which meant that he rarely did. Alex’s sleep improved with medication but was still very disturbed and unpredictable,
“For example he can still get up between 12-1am/2am/3am and be awake for anything between 30 minutes – 4 hours”
Charlotte was never a good sleeper, and just as she was beginning to sleep through the night Alex was born. Rebecca hadn’t had a full nights sleep for many years and this took its toll on her health.
Randall and Parker (1999) found that the most common cause of anxiety and the most severe problem for parents of children with ASD was sleep. Parent’s also reported that many other stresses were associated with lack of sleep.
The most stressful aspect of parenting a child with ASD for Rebecca and James was the unpredictable nature of everyday and the inability to be spontaneous. With most challenges there were helpful strategies, for example using pictures to communicate but very little could be done to help unpredictability. If a routine needed to be broken, like needing his hair washed in the morning when he normally had a bath in the evening, it was extremely stressful.
Social isolation is a major cause of anxiety for parents of children with ASD (Bristol 1984).
“You feel like you are on your own with the problem…. in a bubble……… .Most people know nothing about autism so you don’t have that thing where you talk about what your child has done….there is no reference point”.
Other people were interested in hearing about Alex’s history but talking about it was depressing for Rebecca and James. Meeting children of the same age as Alex was upsetting. Not only did they ask questions about Alex’s inability to do things but seeing children do the things that Alex was unable to was difficult..
As Alex got older, social situations became more difficult.People began to question why he couldn’t talk and explaining to people all the time was tiring. Doing things as a whole family was difficult therefore they would often do things individually with Charlotte so that she was not left out.
Socially there was a marked difference between the 2 children. Charlotte would have friends to stay and then they would return the favour but this never happened with Alex, the lack of respite was an added stress.
The Educational Statementing Process
This was a significant source of stress to the Evans family, however they felt that their experience was not nearly as bad as other parent’s they had talked to. They disliked that the child was viewed in monetary terms and when the statement was explained, the LEA reiterated the monetary figure. Rebecca and James felt that explanations of the actual support available would be more valuable.
Coping Strategies and Support
Structure and Visual Prompts
Having a clear structure to each week helped with Alex’s behaviour, ensuring he knew where he was going each day and keeping routines the same. A structured visual timetable depicted what would happen, using pictures and photographs of the places and people he would visit. It was also used for main parts of his daily routine such as bath time and bedtime helping Alex to understand what would happen next.
Information and Learning from Experience
The family’s experience of stress changed over time. A number of behaviours that were particularly difficult when Alex was younger stopped as he grew older, for example screaming and head butting. The change in behaviour was partly attributed to growing up but also as time went on the family understood the things that affected Alex’s behaviour. For example, in the past Alex’s parents were inclined to coax Alex to eat food or wear clothes that he did not want to but have learned that this achieves nothing. Rebecca learned through reading literature about autism that certain textures of clothing could feel like sandpaper on the skin. She quickly recognised that wearing an item of uncomfortable clothing could be a trigger for a bad day,
“Now if he scratches even a little bit when he puts his clothes on, I take it off straight away.”
Learning to be patient was a huge asset to the Evans family. They built up Alex’s confidence before pushing him a little harder, using visual and verbal prompts and waiting for a response before the information was given for a second time. James and Rebecca acknowledged that being patient was much easier when they didn’t need to be anywhere important.
Reducing Work Commitments
James decided to take a break from work to help with the family; this would not be an option for many families but it had a huge impact on the life of the Evans family. Life became more settled for Charlotte as she could regularly be collected from school by the same parent. In the past this had been difficult because of Alex’s unpredictable behaviour. For Rebecca the biggest relief was sharing the responsibility of attending meetings and completing paperwork. It also meant that when paperwork needed to be done Rebecca could focus her attention on this whilst James dealt with everyday routines.
From James’ point of view, of all the support and coping strategies employed this reduced stress levels more than anything else,
“Often I would have to go out leaving Rebecca with Alex knowing that she was really ill and he was being in a right state” James found it difficult having to explain at work what was happening. There was a financial impact for the family but this was significantly outweighed by the benefits.
Support from professionals and friends
The most valuable professional support came from the people at the top (e.g. consultants) and those that worked with Alex on a regular basis (e.g. early intervention tutor, nursery staff). The consultants were particularly good at helping Rebecca and James get in touch with services and moving things along quickly. The NAS Early Bird programme helped provide initial information about autism. They felt that some professionals (mostly those that saw Alex less regularly) would not be missed if they no longer had contact with the family.
Friends were an important source of support and it helped to go out without having to talk about autism. Meeting other parents of children with Autism meant experiences could be shared without the need for explanation.
Focusing on the present
Rebecca stressed the importance of dealing with short-term problems and not worrying about the long term. This took some adjustment for Rebecca as a natural forward planner. She felt there was little point in focusing too much on the future because they couldn’t know what would happen or what Alex would be like.
A Wish List for the Future
Rebecca and James had elderly parents so felt it was unfair to ask them to babysit, this meant there was very little respite.They would love to have a number of options for respite e.g. in the home or in another venue. They felt that respite was not offered; but was available only on request. The options of what is available were unclear, and they felt it would be helpful if a certain amount of funds were allocated and a number of options presented for consideration. Finding babysitters for an autistic child was very difficult, his support tutor was invaluable as when she baby sat they could go out knowing that she knew Alex well and would be in control.
Rebecca and James would like additional input from a speech and language therapist. As Alex had no spoken language they assumed that he would get maximum input from a speech and language therapist. They felt the level of involvement was insufficient and that children with some language got more hours than those with no language at all.
For her own sanity Rebecca was really keen to return to work full time once Alex was settled at school. However, she couldn’t see how this would work unless James wasn’t working. As part of the conditions for James’ leave, he was obliged to return. Returning to work in a new position would be particularly difficult; in an old post there would be more understanding of the family situation and therefore negotiation for flexibility. In a new post Rebecca felt it would be very difficult to have time off for meetings etc.
Disclaimer: All names are pseudonyms.