The Simpson family are Leanne, Chloe (age 6) and Robert (age 3). Leanne separated from the children’s father before Robert was born. Robert received a diagnosis of autism when he was 2 years 4 months. The main concerns at this time were communication and social interaction. Leanne also felt that she needed a lot of information because she knew very little about autism. Robert attended pre-school for 5 mornings per week supported by a tutor, a tutor also visited at home.
Causes of Stress
Leanne felt that parenting a child with ASD wasn’t significantly more stressful than parenting any other child but different things caused her stress. The knowledge that he would always be autistic in particular changed the way she thought about things. Once she knew that he was autistic she felt unable to allow him to be content to do his own thing, there was pressure to ‘get him to do things’ so that he would reach his full potential’.
Robert as a very tactile child often sought sensory stimulation, including tickling, walking on bricks and exploring paint, water and sand with his hands. Often, when he had dirtied his nappy he would play with the contents and smear it over the room. This usually only occurred when he was on his own. At night Robert wore an all in one pyjama suit with the fastenings sewn together so that he couldn’t get his hands in his nappy. This worked well, and Robert stopped smearing every night. Leanne felt that bathing him after an incident was offering him a reward because he enjoyed baths. Leanne avoided this and instead made minimal fuss and put Robert in the shower (which he disliked).
The most stressful aspect of this behaviour was that it had to be dealt with alone. Leanne felt that school would help with other things, like communication but this was primarily a home problem.
On the whole the most stressful aspect of parenting a child with ASD was communication.
“Smearing is the most stressful thing day by day but communication is the most stressful thing on the whole”
Robert’s inability to communicate was less stressful than his inability to understand. It was often possible to guess what Robert wanted or offer alternatives.
Robert’s communication improved significantly since his home tutor first became involved. Initially Robert’s only form of communication was to push Leanne towards desired objects. A picture exchange system (PECS) was introduced to enable Robert to exchange a picture for a desired object. Initially this was very difficult for Robert to grasp and although he was able to pass one card to an adult he could not make a choice between 2 or more. Eventually Leanne discovered that he was interested in fridge magnets, the pictures were mounted on magnetic strips and placed on the fridge. Desired objects were placed out of Robert’s reach and each time he would reach for something Leanne would ask ‘What does Robert want?’ whilst signalling to the pictures. Robert quickly learned to pass the correct picture spontaneously. Robert developed a wide range of vocal sounds and used some words in context including ‘go’ and ‘again’.
3. Going to Public Places
There were 2 difficulties when taking Robert to public places: –
- Throwing himself on the floor and refusing to walk .
- Grabbing things from shop shelves.
Robert had a large pushchair that was generally used when Robert went out. This enabled Leanne to visit a variety of places that would not otherwise be possible. However, Leanne was anxious that as he got older it would be less appropriate to take him out in a pushchair. When Robert was expected to walk even short distances (e.g. from the car to his sister’s school) he would drop to the floor and refuse to move. Leanne’s main strategy for dealing with this was to walk away and wave good-bye, Robert usually responded by following. When this didn’t work Leanne tried to make it into a game. Robert enjoyed playing ready, steady go games and running on the word ‘go’. The game was used to encourage him to walk.
4. Impact on Siblings
Chloe was old enough to be aware that Robert was autistic but Leanne found it difficult to explain things to her in a comprehensive manner,
“Only the other day she said ‘if I was autistic Robert wouldn’t be’, which is quite hard.”
As a single parent it was also difficult to go to places that Chloe would like to visit. Leanne found it difficult to cater for both of their needs.
The diagnostic process in itself was not stressful but Leanne felt that her health visitor/doctor did not prepare her for a diagnosis of autism,
“When they were asking me questions that I know now was to do with autism, nobody mentioned to me at all; it could be this, which meant that when I did go to the paediatrician and they said it probably was autism it shocked me”.
Leanne would have liked to have been prepared for the possibility so that she could have found more information.
6. Nursery and Schooling
Finding the right nursery place for Robert was stressful for Leanne. Robert was offered a place at a specialist nursery from September but in the meantime Leanne felt it would be valuable to attend a local pre-school to see how he would interact with other children. Many of the pre-schools she visited didn’t feel right, as it seemed they had no experience of autism and were less than enthusiastic about taking him. On the contrary Hawthorn’s pre-school had experience of autism and appeared very flexible in their approach.
After a few weeks at the pre-school Leanne became worried because nursery workers gave comments that they were unhappy about Robert attending without a support worker,
“Hawthorn’s was a complete nightmare that really did stress me out…knowing what I do now I wouldn’t have put him in that school”.
With time and negotiation Leanne felt more comfortable about Hawthorn’s but feels that it was an unnecessary burden.
Leanne was also worried about choosing the right school for Robert; she felt that ultimately it was her decision but that it was a huge weight on her shoulders,
“If you get the right school and the right help then wherever he goes in life that will help him get to the highest potential, because that will be the majority of his learning.”
Coping Strategies and Support
1. Professional Support and Information
The Support Leanne had from professionals was particularly valuable, the most notable of these being his home tutor and the Early Bird course. These helped share information about autism and suggested strategies for dealing with problem behaviour.
Leanne had a particularly good experience with her Early Bird group. The group of parent’s bonded particularly well and they continued to support one another and meet socially both with and without their children.
The most important contribution from the home tutor was the introduction of PECS. Leanne felt that she needed to be taught from scratch how to communicate with Robert and the regular contact with the tutor helped. They also helped Leanne to see what Robert was capable of,
“Before I used to say he is never going to do that, it’s taught me not to think that way”
Having someone to talk to on a regular basis, particularly someone with knowledge of autism and experience with other children was invaluable. The flexibility of the early intervention programme and informal relationship with the tutor meant that there was no pressure,
“You feel like you aren’t on your own”.
2. Support from Friends
Leanne’s close friend Helen had a child slightly older than Robert who was also autistic. They spent a lot of time together both with and without the children. Leanne often telephoned Helen when she was having a particularly stressful time. Helen had first hand experience of autism and the practical advice she gave was refreshing,
“I don’t want to hear ‘aah’, I want to hear ‘yes I’ve been through that as well’ ”.
A Wish List for the Future
Leanne would like to continue having someone help her develop strategies for dealing with Robert’s behaviour.
If Leanne could have any additional help the most useful thing would be to have a regular break. Someone looking after the children for one night per week would give Leanne something to look forward to. It would be important that she could trust the person caring for her children, being sure they were safe would help her relax. Leanne felt support of this kind was lacking, her parent’s would baby-sit but never have the children overnight.
“ If you don’t have anything to look forward to it is a constant thing. If you’re having a bad week, which you do, and your child’s having a bad week as well you can see no end to it.”
As a single parent this is particularly important. Single parents are more likely to require respite care and support from other families.
Story 1 : Taking Time off Work Story 3: The Step Parent’s Perspective
Disclaimer: all names are pseudonyms.