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.