Exploring the link between homelessness and autism

Dr Georgia Lockwood Estrin recently launched a new project aimed at better understanding the connection between autism and homelessness, particularly among women. She hopes this research will contribute to the development of more specialised and effective pathways out of homelessness, as well improving our understanding of how and why female autism may lead to different experiences of homelessness.

Dr Georgia Lockwood Estrin

While looking into public health in low-resource settings in the UK, Georgia came across a statistic in a paper from 2018 which immediately stood out to her. It suggested that approximately 12% of rough sleepers are autistic. She found almost no further literature on the subject and even less that counted or included women.

Having spent a large part of her career researching neurodevelopment, markers for autism and barriers to diagnosis for autism, Georgia realised the importance and potential value of finding out more about this population. She launched the Homelessness and Autism project with the support of Birkbeck’s Research Innovation Fund (RIF), which is made possible thanks to the generosity of our community. The primary goal of the project is to improve the services available to autistic people who are experiencing homelessness. She hopes that by researching why more autistic people are becoming homeless, we can flip the narrative to examine how our society impacts autistic individuals, rather than how autistic individuals engage with the world around them. 

“There are a lot of factors that account for people being at a high risk of homelessness, such as unemployment, mental health challenges or relationship breakdowns,” Georgia explains. “And many of these risks affect autistic people disproportionately. According to the Office for National Statistics, only 25% of autistic adults are in any type of employment. The National Autistic Society found that 79% of autistic people say they feel socially isolated. If you combine these factors with lack of diagnosis and lack of support, as well as the potential challenges that stem from that, you can see why autistic individuals could be more likely to fall into homelessness.

“But in reality, we know very little about pathways into homelessness for autistic people, and almost nothing about the consequences of becoming homeless compared to non-autistic people,” adds Georgia. “There is a real need for basic statistics on the prevalence of autistic people in the homeless population, on how risk factors for becoming homeless impact autistic people and how being homeless and autistic can affect health and mortality rates for these individuals.”

There are however challenges in collecting this data, as there are a variety of factors which make this group difficult to identify:

“First, a lack of access to care may be a key reason why someone is homeless, so it is unlikely that they would have also been through the complex clinical process needed to receive a diagnosis of autism. Second, there is major underdiagnosis of autism in women. Until relatively recently it has been largely considered a male “condition” and markers for autism can display differently in women. For example, autistic women are widely thought to be better at ‘masking’ or ‘camouflaging’. This means they are more likely to adopt compensatory behaviours to fit in, such as copying gestures or reactions, which in turn contributes to misdiagnosis. Evidence also suggests a link between masking and long-term mental health challenges.”

“If homeless women are trying not to be found and do not have a diagnosis, or are unwilling to disclose it, how do we find them?”

“Furthermore, women are vastly undercounted in homelessness figures. We call this ‘hidden homelessness’, which could include people who are not legally entitled to property, people sleeping on friends’ floors, or people who do not want to be found by service providers. Homeless women are more likely to face violence and sexual abuse and may therefore be more inclined to stay out of sight and less willing to trust shelters or support programmes.

“Crucially for this project, if women are trying not to be found and do not have a diagnosis, or are unwilling to disclose it, how do we find them?”

Bearing these challenges in mind, Georgia stresses the importance of finding a way to carry out this much-needed research while giving careful consideration to the ethics of working with a potentially vulnerable group people and facilitating the appropriate support structures.

As one of the first stages of this project, Georgia organised a two-day workshop which brought together people who have been diagnosed with autism and experienced homelessness, academics, clinicians, frontline workers, as well as charities and NGOs working in homelessness, domestic violence services and autism. She recalls:

“It was extremely powerful because we had some autistic women who spoke very honestly about their experiences. It helped to identify gaps in our knowledge and identify the questions we need to ask. One of the positive things we got out of it was that everyone present resoundingly felt that bringing to light statistics on prevalence and risk factors would actually be helpful for autistic people and could make a difference. These statistics would not only raise awareness of the issue, but also explain why it is important to have an autism strategy and encourage autism-specific training for frontline workers in the homelessness support sector.”

As this project progresses, Georgia hopes to answer how and why autism may impact routes in and out of homelessness, how we can change systems to improve access to services and the specific ways in which we can improve training, with the ultimate goal of getting more people on the right paths out of homelessness.