Parents' experiences of obtaining a diagnosis of autism: Training Amaze (Autism Victoria)

My experience meeting the team from Amaze 
Last week I had the pleasure of meeting and training the team at Amaze. Amaze (previously known at Autism Victoria) is a not-for-profit organisation dedicated to "improve the quality of life for people affected by Autism Spectrum Disorders (ASD), their family and carers." 

You would be forgiven thinking that Amaze had a staff of 100. Not only do they support

thousands of people in Victoria with autism, they run many fund raising events. This includes the successful World Autism Awareness Day in Melbourne which was attended by an estimated 4000 people in April 2013! This day also involved the Light It Up Blue International campaign. Fed Square, AAMI Park, Crown Casino, The Eureka Tower, The Arts Centre Tower and Hamer Hall were lit up blue blue to generate awareness about Autism Spectrum Disorder.

Are there 100 staff to accomplish all this great work? No, there are 26 people. So kudos to all the staff at Amaze who do a wonderful job supporting people with Autism in Victoria. 

A shared understanding

Amongst other topics covered within the morning training session, two issues in particular where addressed: 1. Parents' milestones obtaining an ASD diagnosis and 2. Solution Focused thinking. This blog post will focus on the former, and the latter will be a blog post written at a later date. 

Firstly, The team were encouraged to share their thoughts and feelings about their first experience with autism. This was an opportunity to engage in what parents are feeling when they telephone Amaze for advice and support. 

This activity evoked emotions ranging from: fear, worry, wonderment, anger, helplessness, laughter, anxiety relief to sadness. This mirrored the range of emotions parents experience when receiving a diagnosis of autism. 

Parents' experiences of the ASD diagnostic process: the milestones

At this juncture it was an opportunity to share my research on parents' experiences of the ASD diagnostic process in the UK. A mixed methods design was used comprising of collecting and analysing quantitative data on 800 children and qualitative data from interviewing parents who had experienced the diagnostic process. 

Below is an overview of the six milestones parents experience when obtaining a diagnosis. 

01. Pre-diagnosis phase

The initial milestone for parents is the pre-diagnosis phase. This is accompanied by parents not knowing what is 'wrong' and feelings of helpless and powerlessness. Parents also reported that co-morbidities (like language difficulties, sensory processing difficulties, developmental delays) clouded the issue and in some cases prolonged the diagnosis. This often caused frustrations for parents. 

02. Mixed emotions 

Parents described their mixed emotions once they received the diagnosis. On the one hand the diagnosis brought a sense of relief, but also feelings of fear and sadness. In some cases the experience of obtaining a diagnosis was traumatic for parents. 

03. Aspects of parenting

Parents spoke about the difficulty of parenting a child with autism. Many parents reflected that they needed to become a 'different' parent to their autistic child. Parents reported difficult emotions associated with parenting included guilt and anger. Some parents suffered from depression. Other parents found that family members freely gave advice and criticism of their parenting with little understanding of what is involved in bringing up a child with autism. 

04. Concerns for the future
It is true that many parents are worried about their child's future. However different types of concerns occupied a the mind of a parent with autism. Some parents worried if their child would be able to hold down a job, move out of home, have relationships. Interestingly, during periods of transition (a new year level, a different school, a new teacher, applying for exam dispensation) parents had to re-visit difficult emotions because they were reminded of their child's limitations. This suggests that there is a long term impact beyond the initial diagnosis. 

Summary
The general consensus amongst the staff at Amaze, is that they are dealing with much more than 'just' autism. Parents who have obtained a diagnosis of autism are feeling a range of difficult emotions. Some parents experience the diagnosis as a relief, others find it traumatic and upsetting. 

According to the statistics from the Australian Society for Autism Research the national average autism prevalence in school age children was 1 in 62.5 (date from June 2012). This highlights the importance of organisations like Amaze who provide support, knowledge and training for parents, schools and organisations. It also highlights the need for a better understanding of autism in schools, within families and society as a whole. 

To come....next blog post will be on Solution Focused Thinking: tools for tough conversations.  

Sociograms

The use of Sociograms in child psychology


Presenting issue:
A school wanted help with a Year 2 class (age 7-8) who were having difficulty getting along with each other. Staff reported that some days they seemed to ‘hate each other as a class’.

I had  recently heard Robin Banerjee’s presentation about Sociograms at the Division of Educational & Child Psychology Conference in January 2010. I was inspired by his talk and thought Sociograms would be a useful tool to unpick the class dynamics.

What is a Sociograms?
Quoting directly from Banergee’s webiste: http://www.sussex.ac.uk/Users/robinb/socio.html

• A Sociograms is a visual representation of interpersonal relationships within a group.  

• It can be especially useful in an educational context, in order to help teachers and other staff understand more about pupils' peer relationships.  It is often a useful starting point for identifying and addressing the social and emotional needs of pupils.

How did I incorporate sociograms into my work as a practicing psychologist?
Observation:
I observed the class three times, mainly because the teaching position was a job share and I wanted to see if the class dynamics were affected by the presence of a different teacher. I also wanted to see if the children behaved differently in the morning compared to the afternoon which warranted more than one visit.

On reflection, did I need to observe so many times? Perhaps not, but by being there I felt like an ‘anthropologist in the field’ which paid back later during the final consultation session with the class teachers because I felt that I really knew the children.. Can you still use sociograms and not carry out observations if you don’t have time? Absolutely yes. For me it was the ‘cherry on the cake’ but it isn’t essential.

Consultation with class teachers:
Consultations with both class teachers were carried out before the classroom observation and after I collated the data. This is essential because It was an opportunity:

• to unpick what was currently occuring in the classroom.
• to think systemically about outside factors that perhaps were influencing the class dynamics
• to feedback results to give a greater understanding of the class dynamics and work together to problem solve some ideas to help remedy issues.

Collecting the ‘data’:
Banergee explains that “Sociograms are made on the basis of pupils' nominations of classmates in response to questions.  The exact wording of the questions can vary depending on interests, but a common scenario involves asking pupils to nominate three classmates with whom they most like (ML) to play/spend free time and three  classmates with whom they least like (LL) to play/spend free time”.

This can be done as a whole class activity. Pupils (individually) record their answers to the questions on a piece of paper to be collected and kept confidential by the psychologist. You need to be mindful of children with learning difficulties who may need some extra support. It can be done with individual children, but for a busy psychologist this can be time consuming.

During the DECP conference I recall Dr Mark Turner quite rightly question the ethical nature of asking children to record who ‘they least like’ to play with. In using the Sociogram in my practice this was something I felt a little uncomfortable with but I counterbalanced this potential issue with a short ‘PSHE’ type introduction. It was explained to the Year 2 class what we were doing, why we were doing it and how someone would feel if they were told to their face that they were put in the ‘least liked’ column. It’s part of life to like some people more than others, what is more important is treating everyone with respect and kindness. The advantage of observing three different sessions meant that I could monitor this situation. The class teachers reported that no short or long term issues occured from this exercise.

‘Analysing’ the data:
Banergee’s website gives a step-by-step guide to administering the sociometric survey and generating the visual representation which is, in essence, the sociogram. Banergee assures that your data is confidential (although you don’t need to write in children’s names anyway), however, be mindful that you are most likely adding to Banergee’s own research and data collection.  It generates an interesting diagram like this:

Figure 1: Sociogram generated from Banerjee's website.

Banergee also gives some advice on interpreting the sociogram. I found this very useful to use alongside the other psychological models you naturally draw on in a consultation.

How did the use of a sociogram help class teachers?
The sociogram generated from the children’s answers were shown to the class teachers. The results of the sociogram prompted the following discussion points/explorations:

Supporting ‘rejected’ and ‘controversial’ children

• Results from the Sociograms shows that four pupils were considered to be ‘rejected’ by peers. Class teachers reflected that they will need to monitor these children’s feelings and their patterns of thinking, and it will be important to support these pupils' development in targeted work. In addition, the links in the Sociograms provides valuable information for supporting and managing these pupils in group work. For example the Sociograms shows that Jane likes to play with Sally. It was decided to sometimes pair these two children occasionally to help Sally to feel less isolated.

• The children we are viewed by peers as ‘controversial’ were explored. Children who fall into this category are considered to be dominant, perceived to be popular yet they may be also seen as aggressive, disruptive and intimidating. The class teachers reflected that this group of children did have an impact upon the class ethos and that it needed to be monitored.

The ‘popular’ children

• The class teachers were able to successfully spot the children who were considered ‘popular’ because they consistently show socially competent behaviours. I felt it was important that there were not too many surprises from the sociograms findings because it is empowering for class teachers when they ‘know’ and understand some aspects of their class dynamics.
• The class teachers discussed how they could utilise the ‘popular’ group of children to model good interaction and friendship skills. Although it was recognised that children in this group would need support to do this and cannot be solely relied on to fulfil this role.

Using observation skills in combination with the Sociogram

• Based upon classroom observations it was evident that some children in the class are able to learn, but they are not emotionally ready to learn. The class teachers requested some resources on the following areas to support pupils to develop skills to: a) Work co-operatively. b) Learn it is okay to lose and c) Listen to each other.

Preparing for transition

• The results from the sociogram helped inform the Head Teachers of the Infant and Junior School to make decision on how to compile new class lists for the new academic year. The new Year 3 classes were trailed while the pupils were still in Year 2. This enabled the children to become comfortable with their new class set up and gave scope for ‘tweaking’ before the new academic year.

Class teachers evaluation of using a Sociogram

• The class teachers commented that “the Sociogram gave us a useful insight into the psychology of our class. How we, as adults, view the inner workings of a peer group is different to how children will view their peer group. Seeing a glimpse of what our children experience has helped us to understand the class dynamics and how this needs to be supported.”

Summary
Overall using a sociogram was extremely useful for the purpose of unpicking and exploring class dynamics. The visual representation helps the mind to visualise and understand how children are connected within the classroom system. When the work was reviewed with the class teachers 3 months later they reported an improvement in their understanding of the classroom dynamics following the work with the Sociogram. This subsequently informed how they responded to issues and they felt the class were happier. 

Using Sociograms was a helpful springboard in which to discuss and explore other issues and compliments other psychological frameworks such as the consultation model and Solution Focused Thinking. Above all it helped the school staff to problem-solve different ways to move forward with a new and fresh understanding that was illuminated by the sociogram.

I would be interested to hear from other psychologist who have used Sociograms in their work. What do you think of it as a tool? What are your success stories?



Further Reading:


Banerjee, Watling and Caputi (2011) Peer Relations and the Understanding of Faux Pas: Longitudinal Evidence for Bidirectional Associations. Child Development, Vol 82 (6) pp.1887-1905


Caputi, Leece, Pagnin and Banerjee (2012) Longitudinal effects of theory of mind on later peer relations: The role of prosocial behaviour. Developmental Psychology Vol 48 (1) pp.257-270