Assessing Parenting in Families Affected by Autism Spectrum Disorder

POSTED BY: PHIL GORDON ON SUN, APR 28, 2013

In honor of the end of Autism Awareness Month, in this post we share the experience of Dr. Emmanuelle Davison who assesses parenting in her work with families raising a child with Autism Spectrum Disorder (ASD).  

According to a 2008 national study cited by the Centers for Disease Control and Prevention, 1 in 88 children in the United States who were 8 years old were identified with Autism Spectrum Disorder. Although symptoms are usually apparent before age 3 years, the peak age for identification is 8 years.  More recently a 2011-12 Centers for Disease Control survey of parental report showed the ASD prevalence of school aged children 6 to 17 years of age of about 1 in 50 in the United States.  Because of its high prevalence, awareness of ASD is essential.   Early intervention can make a big difference.  Below is an example of how assessing parenting helped one family with ASD.  

Emmanuelle Davison 

Honeylands Specialist Child Development Centre in Exeter, UK

Honeylands Specialist Child Development Centre provides multidisciplinary assessments and therapeutic interventions for children under five where there are developmental concerns. Children who regularly attend the centre present with a range of medical conditions, congenital abnormalities and disabilities e.g. cerebral palsy, visual and hearing impairment, sensory integration difficulties and autism spectrum disorder. For many children, birth was traumatic and psychological support in the neonatal period was limited. 

When we meet families for the first time, parents often present as traumatized, isolated and bereft, which invariably impedes on their capacity to read and interact sensitively with their babies. As a Psychologist, I support positive interactions between parents and their babies, which research shows have a positive impact on development. The Early Interaction Service is aimed at children aged 2 years and younger, with the aim of facilitating a positive and nurturing relationship between parents and babies. Seeing the team’s psychologists is part of the work that parents commit to when coming to the group. 

The first time we meet parents, they are given the opportunity to tell their child’s story and share how they are feeling about their child’s journey into the world. Assessing parent-child interaction during play is then carried out using the Keys to Interactive Parenting Scale (KIPS) as a tool. We watch the video with parents and talk about what they see and also what they feel. Assessing parenting informs the conversation, i.e. what is positive and what areas need developing. We assess parent-child interaction again at the end of the intervention as an outcome measure. 

Sam’s Success

Sam was 2 years old when she first came to the centre with a working diagnosis of Autism. Sam preferred her own company and engaged in repetitive and stereotypical play most of the time. She had no speech or language and produced a high pitch scream when unsettled. Her mother Val felt she did not know how to relate to and understand Sam. She felt redundant as a mother and consequently let her family take over parenting and make decisions about Sam. Val’s expectation of coming to the centre with Sam was that she wanted Sam to become more verbal generally, but also more interactive with her. As part of the overall assessment, Sam’s speech and language skills were assessed. Her cognitive functioning, fine motor and gross motor functioning were assessed within the group. I met Val and Sam for an Early Interaction Assessment. Val was keen to connect with her daughter, especially when the benefits on Sam’s development were explained.

Val and I met on three occasions before their assessing parent-child interaction. We focused on her life during pregnancy and immediately after Sam’s birth. Val explained that pregnancy was a complete shock. She had been told that she was infertile due to polycystic ovary syndrome and had resigned herself to a life without children. She had recently separated from her partner due to the abusive nature of their relationship.  For the whole of her pregnancy, Val took antibiotics and strong analgesics, thinking that pelvic discomfort were symptomatic of a cyst. On her due date, she remembers walking into town and suddenly doubling over in pain. She immediately panicked and thought that the ‘cyst had burst’. She was on her own when the ultrasound scan revealed that she was in labour. She gave birth alone and in shock. She remembers feeling very depressed for a year after that. She had to leave her job, give up her flat and move in with her parents. Her own mother took over Sam’s care and she found it more and more difficult to assert herself as a mother, even when she started to feel stronger and her depression lifted.

Val and Sam moved into a small maisonette near family when Sam was two years old. Val felt that Sam did not see her as mum and that they were growing apart. She blamed herself for Sam’s developmental difficulties. She often asked whether Sam would be the way she was, had she not taken antibiotics and painkillers during pregnancy and had she not been depressed for the first 12 months of Sam’s life. Gradually, Val started to feel able to make decisions about how to talk to her parents about her feelings. She also made a conscious decision to have a break from seeing them whilst doing the work with me.

Val and I met for 4 sessions before arranging an assessment of parenting, which was painful to watch for Val. She could see how much she struggled to play with Sam. Given Sam’s speech and language disorder, the specialist speech and language therapist, Jill joined us for this part of the work. She helped draw a programme for Val and Sam based on KIPS parenting assessment scores. After assessing parenting, Val, Sam, Jill and I met for three sessions. Each of these sessions focused on areas that needed work. Sam and Val would practice, with us modelling and explaining. A typed summary was provided after each session to give Val a reminder of what to try. When we assessed parenting again, Val showed significant progress. Briefly, the areas that Val and Sam worked on at home included:

  • Following Sam’s agenda during play
  • Reading Sam’s cues; Within that context, physical contact and boundaries were explored
  • Supporting Sam’s emotions
  • Supporting Sam’s speech and language skills
  • Supporting learning and curiosity

Val was very positive about the intervention and said that Sam was calling her mummy and started to approach her more and more for help and comfort.  When asked what was most helpful about the intervention, Val said that time to talk about her feelings, combined with the practical aspect of looking at how she interacted with Sam, together with opportunities to practice parenting differently had been very useful. In her opinion, talking alone would not have helped.

Sam is now 5 years old and attends her local main stream school!