Talking about Quality of Life until we are a little horse
Maya wasn’t the average girl. Following a diagnosis of autism her life took a sad but common course of events – friends wouldn’t return after one playdate, she became isolated at school, seemed depressed and withdrawn and her school work and behaviour suffered. Out of the blue, Maya made a friend called Charlotte at Horse Camp (Maya’s special interest area). As playdates, sleepovers and trips away were shared Maya was transformed so significantly that her family separated her life into BC & AC (Before Charlotte & After Charlotte). At night BC if there was a noise, Maya would say ‘shhhh, it’s bed time & the rules say quiet’, but AC they would giggle uproariously at fart jokes.
The fuller story of Maya horses & life AC can be heard on in Act 3 of episode 525 of the This American Life podcast. The story shows the role of a quality of life on a person’s behaviour.
I’ve written about quality of life in relation to Positive Behaviour Support previously, that happiness through a good quality of life is the ultimate outcome of PBS.
Quality of life (QoL) is one of those things that can be hard to define. It has been described as an individual's “perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (World Health Organisation) but it’s hard to picture exactly what that might mean. Robert Schalock is one of the respected researchers here and defined the widely accepted model for assessing QoL in the context of disabilities (outlined in the table below).
Human (respect, dignity, equality, privacy), Legal (citizenship, access, due process)
Life of the community, Interactions with others, community roles (contributor, volunteer)
|Self determination||Choices, decisions, personal control|
|Physical well being||Health, activities of daily living, leisure & recreation|
|Material well being||Finances, employment|
|Social inclusion||Living status (segregated)|
|Emotional well being|
Free from abuse & neglect
Continuity & security, iIntimacy, friends & caring relationships
Education, personal competence (cognitive, social, practical)
Unfortunately, words like ‘self-determination’ can seem like well-meaning jargon and can be difficult for the average mum, dad or PBS specialist to apply to a specific individual.
I’m really interested in trying to describe what a good quality of life looks like from the perspective of a whole range of individuals – real life practical examples – if you are 10 in a mainstream school, what does a social inclusion look like? If you are 44 living in a group home, what is self-determination and what’s different if you are 4? I’m also interested in what the barriers are in achieving a good quality of life. For Maya it was having a genuine friend who shared her interests, respected and tolerated her eccentricities and liked her just as she was.
Fundamentally there are some big questions here about what makes people happy and a cornucopia of books, movies and information about this topic.
- Are the quality of life indicators the same or similar for people of different ages, abilities or cultures?
- How do we establish the goals for a quality of life for people who cannot communicate about these issues? Is it right to make assumptions based on others quality of life or is it purely personal?
- Does this have any reflection on the type of we support we provide for people on the autism spectrum?
My colleague Chanteé Nixon and I sat down recently to think about quality of life for a 12 year old boy we support and we tried to put some words to his quality of life using the areas outlined in the table above.
- I want to have someone who calls me their best friend
- I want to be invited over to a friend’s house to play and to have them come to my house.
- I want to be part of a group of kids who play Minecraft
- I want mum and dad to listen to me and understand my side of the story
- I want to feel loved and liked by my parents
- I want to feel safe where I am so I won’t be picked on or teased
- I want to have the same choices that my sister had when she was 12
- I want to feel happy with who I am and for me and others to see my good qualities.
- I want to be able to be trusted to go to the corner shop by myself or the skate park
- I want to go to fun places (Wet & Wild, Powerhouse)
- I want a bit of pocket money (and the chance to earn some more if I want to)
- I want to be known at school as the kid who knows everything about Skylanders
- I want to be recognised for looking after my grandma and the little kids at school with their reading
If we are serious about quality of life we should be measuring this as an outcome of our service delivery. A recent review of the literature on QoL measures for use in autism identified a lack of focus on QoL in autism research and suggested that a new condition-specific measure of QoL was needed (Eapen et al. 2014).
Sometimes key components of quality of life are easily overlooked in our support. Gary Mesibov (of TEACCH fame) recommended a book in his uplifting APAC11 presentation in Perth called ‘How everyone on the Autism Spectrum young and old can become resilient…” (Groden et al 2011). Chapter 4 of the book focusses on teaching kindness. There are many many books about how helping others is a key to happiness and it’s good to imagine how we can use this to increase people’s quality of life – I’d love to see a group of people on the autism spectrum run to raise money for cancer.
For most of us it’s hard to imagine that doing chores is part of a good quality of life. As wonderful as a week in a nice hotel might be, after a while we become uncomfortable having everything done for us – there’s something about being independent and looking after ourselves that gives us a sense of being purposeful. This thinking is at the heart of ‘Active Support’ – an approach that seeks to increase the participation of adults with disabilities in their everyday life; even vacuuming and washing up!
Saddle up and don’t say ‘nay’, let’s make quality of life our mane goal and talk about it until we are all a little horse. Be brave and leave me a comment or feel free to ask questions.
Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder. Eapen et al. (2014) Autism Res Treat. Autism Res Treat. 2014, Published online Mar 20.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3977417/comments powered by Disqus