Moving house with autism
Historically, autistic people led lives characterised by limited independence and reduced social participation. This lack of independence covered many domains, such as friendships/relationships, employment, and living independently. Indeed, even today many autistic adults still live with their parents or siblings.
This lack of independence is a cause for concern.
Most autistic people are adults and inevitably autistic children grow up and grow old. What happens when those they rely on are no longer around? This concern is echoed by many parents of autistic adults when they imagine their child’s future.
Although this is an under-researched area, recently the National Longitudinal Transition Study of almost 2,000 people in the States compared autistic people with three groups of adults: those with intellectual disability, those with emotional problems, and those with a specific learning disability.
Only 17% of autistic adults live independently, according to one recent study
The results showed that only around 17% of autistic people lived independently, fewer than in the groups with a learning disability or emotional problems. Notably, the autistic individuals were less likely to have “moving experience” (that is, the experience of moving home), with around 80% of autistic adults having remained in the same living place since age 18.
Whilst large scale studies such as this are informative in providing statistics for autistic people in general, there is a stark difference between summarised data covering broad outcomes, and the day-to-day experiences of individuals. Few studies have looked at how additional factors impact independent living for autistic people, and scarcely any of them look at autistic people’s experience of moving home.
Many autistic people have difficulties with ‘executive functions’ such as planning, generating strategies, coping with uncertainty and adapting to new experiences. Problems with making and executing plans, and with general day-to-day organisation have a major impact on aspects of independent living such as moving home.
As with all things related to autism, there is a great deal of variability. This has led to autistic people being characterised by a “spiky-profile” of abilities, and this profile can vary from person-to-person (for example, possessing a great eye for detail, but having poorer planning abilities; indeed, it is likely to vary from context to context).
So, what can we do?
I (David) started a research project, based on my own life experiences as a late-diagnosed autistic adult.
“Moving home is a difficult experience for many people without autism yet it can be much more than stressful for autistic people. It can be utterly bewildering and paralysing.”
This project, with colleagues at King’s College London, investigates a very specific problem I have encountered over the course of my life. I have moved home seven times, the most recent move being from my hometown to London (on the train, with all the belongings I could carry). In conversation with other autistic people I realised that the entire moving process was very negative.
Yes, moving home is a difficult experience for many people without autism too, yet in my experience it can be much more than stressful for autistic people – it can be utterly bewildering and paralysing.
For instance, how do you know what to look for when choosing a place to live? A place may seem ‘good’ when you see it, but what about noise levels at other times of day? Is the transport OK (for work, and grocery shopping)? How exactly do you get your belongings from A to B? If several places look nice – what is it that enables you to choose one over the other? As a researcher and PhD student I know that a sample of one is not enough, so we set out to find some answers and discover if other autistic people’s experience of moving home resembled mine.
Our study, named the “Moving as an Autistic Person” or “MAP” study, involves an online survey designed to capture autistic people’s experiences of moving home. We are also surveying non-autistic people, so we can compare experiences. We want to explore both the positive and negative aspects of moving home; we may find that autistic people have strategies that could be useful for others. As there are many different aspects to moving home, we wanted to ensure we cover a range of topics; we ask about making the decision to move, finding a new place to live, the moving process, and the experience of being in a new home. Additionally, we wanted to gather information about aspects that might influence an individual’s experience of moving home; we include some optional measures of mental and physical health, people’s ability to complete daily living tasks independently, and quality of life.
Capturing real experiences in survey data including the positive aspects – and more data wanted
To date around 200 people have taken part and we are still collecting more data. An initial look shows that a range of people aged 18-71 years from all over the UK and with varied incomes and moving experience took part. Contrary to our expectation, the autistic people did not report making the decision to move home as more stressful than the comparison group. However, the autistic group did report greater levels of stress when finding a new place, during the process of moving, and when in their new home, compared to the non-autistic people. Despite the increased levels of reported stress, it is important to highlight that there were some positive aspects of moving home reported by autistic people.
A respondent said “I had worked out exactly where I would put everything. It worked out exactly as I had visualised”
For example, one participant said of the moving day, “It was exciting and exhausting”, and another described their first day in their new home as “Fun! But stressful. I had worked out exactly where I would put everything […] it worked out exactly as I had visualised”.
Alongside the online survey, we are currently interviewing autistic people to find out in more detail their experiences of moving home. We are interested in how autistic people decide to move, what their preferences are when looking for a property and how they weigh up alternatives. We hope to speak to 20-25 autistic people from a range of different backgrounds and living situations.
Practical tools and resources to help autistic people live independently
So, what will we do with all this information?
Well, the aim of our research from the very beginning was to have practical and helpful outputs. Using the data gathered from both the online survey and the one-to-one interviews, we will design and create resources aimed at helping autistic people plan and implement a home move and settle into their new home.
As well as this work being led by an autistic researcher, we will ensure that other autistic people are involved during the creation of this resource at every stage. It is our hope that the resulting tools will be a small step towards helping autistic people live as independently as they want to, in the right home for them.
The MAP project team would like to thank everyone who has contributed to this research so far.
By David Mason MRC-funded PhD student, King’s College, University of London
with Victoria Milner ESRC-funded PhD student and Francesca Happé Professor of cognitive neuroscience