The Wilkins family; Kirsty, Mark and Connor(4). Kirsty separated from Connor’s father when he was small. Kirsty and Mark lived in Local Authority housing and were expecting a child together. Connor received a diagnosis of autism at the age of 3 years 2 months. A home tutor visited the home for 2 sessions per week focusing largely on behaviour and communication.  Connor attended full time nursery in a specialist nursery school with a support worker.

Causes of Stress

Kirsty had no experience of parenting a child without ASD thus it was difficult to say whether or not it was more or less stressful.  Parenting any child was difficult but when she compared him to other children his behaviour was better.

“I wouldn’t change him for the world, it (autism) is part of him, part of his characteristics.”

The only aspect that she found more difficult than parenting a ‘normal’ child is that he required more supervision because he had no sense of danger.

1. Communication/Understanding

The majority of Connor’s difficult behaviours stemmed from communication problems. Connor understood simple sentences and commands and spoke in short phrases, though some of it was difficult to understand. Kirsty found it frustrating that he didn’t understand what she was saying and that she couldn’t always understand him. His language improved since attending nursery full time and having input from speech therapists, a play worker and tutor but Kirsty still found it difficult.

Connor’s lack of understanding meant he would do things that were not allowed but had no concept of why it was wrong.  He would take food from the fridge just before mealtimes or play with the toilet and bathroom products.

They couldn’t ask him what he was doing because he was unable to answer; they had to go into the room to check what he was doing.

“With a ‘normal’ child you can say don’t touch that and they will say ‘why?’. With Connor you say it is hot and he has to touch it to find out what hot means”

As Connor’s understanding improved and he was able to ask for things he became a much happier child and therefore family stress reduced.

2. Disobedience

Mark didn’t find Connor’s behaviour stressful, but the effect that this had on Kirsty was.   Kirsty felt that there were a number of behaviours that Connor only displayed for her,

“He is like any kid, he will play up for his mum”.

This included running away and when Kirsty said ‘no’ to him he treated it as a game,

“Sometimes I feel like I am always yelling at him, I know it’s not his fault but then I feel stressed because I feel guilty for yelling at him….it’s a no win situation”.

Kirsty also acknowledged that if Connor started the day badly this affected her stress levels all day. If she began the day badly, small things caused her stress that wouldn’t usually.

Mark and Kirsty felt that Kirsty’s family had a tendency to give in to Connor and allowed him to do things that they wouldn’t normally allow. They feel that because of this it was difficult to set boundaries for his behaviour.

3. Going to Public Places

Going anywhere outside of the house was particularly stressful for Kirsty. She didn’t drive and anytime she walked Connor anywhere he would run away and has no road sense.  Kirsty avoided going places on her own. Kirsty’s mum would take Connor out because she had a car and often had Kirsty’s sister to help.  His behaviour improved, he stopped wearing reins and would walk around shops without running. The difficulty for Kirsty was getting him to the shops in the first instance.

4. Concerns about the New Baby

Kirsty worried that when the new baby was born Connor would regress. He liked to imitate babies and animals therefore the family worried that he would want to wear nappies or have a dummy like the baby. The family prepared him for the baby by talking to him, involving Connor in shopping for the baby and decorating the baby’s room. Nursery,his tutor and play worker also encouraged  imaginative play using baby dolls.

Coping Strategies and Support

1. Support from Professionals

Kirsty felt that all professionals were extremely supportive. Since Connor attended full time nursery his understanding and behaviour improved significantly. He developed many good habits such as eating different foods and sitting still for a period of time. Having a tutor and play worker come to the home  helped Connor to cope with new people. In the past he was frightened of people outside of the family but he became more sociable. Kirsty also found the tutor valuable as a source of information. Mark felt that if Connor continued to progress at the same rate as he had in the last 6 months then they would not have any significant worries about his future.

2. Support from Parents

Kirsty felt able to turn to her mum for advice and as a primary school teacher she often had useful strategies. Kirsty’s mother looked after Connor overnight every Wednesday; this gave Kirsty a regular break, which she found particularly helpful.

A Wish List for the Future

Kirsty and Mark couldn’t recommend any further/ different support as they valued all the help they got from professionals. The only thing that might help slightly would be for Kirsty to be on her own less so that when she was feeling stressed she could take a few minutes to calm down without being in the heat of the situation.

Story 2 is a Single Parent’s Perspective and Story 1 Taking Time off Work

Disclaimer: all names are pseudonyms.