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Georgia Cronshaw and Georgia Lockwood Estrin, co-authors of the recently updated Autism and Homelessness Toolkit, write about the reasons why homelessness disproportionally affects autistic people and how the toolkit can support the sector.

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Emily’s Story

The first time Emily experienced homelessness was in her fifties, and the experience took her by complete surprise. Living with a close friend, after leaving her controlling ex-boyfriend, Emily remembers feeling content with her living situation, a nice area, a nice garden, and even a cat… until it was not. One day Emily found her belongings packed up on her bed with a note from her friend asking her to leave. This ultimately resulted in Emily’s first experience of homelessness.

Emily had worked in the council, and the thought of reaching out to the local authority for help was a mountain she couldn't begin to climb. She feared being misunderstood or judged; an invisible barrier of social expectations she never seemed to grasp. The anxiety of explaining her situation to strangers felt like navigating a maze with no exit. The fear of speaking to strangers outweighed her fear of ending up on the streets. So, Emily stayed silent, trapped in a cycle of confusion and isolation, not realising that these struggles had a name – autism - and that understanding it could have been the first step toward finding the help she needed.

Instead, Emily sofa-surfed, relying on friends and colleagues to support her. Emily's life, like many on the autism spectrum, thrived on predictability and structure. The constant shifting from one temporary living situation to another wreaked havoc on her sense of stability. Each new environment, while sometimes offering a respite, often unsettled her established routines and coping mechanisms.

Emily eventually found new accommodation and felt a glimmer of hope. The space was light and airy, within her budget, close to her work, and there was minimal noise – it was perfect.

However, Emily's sense of stability was shattered once again after new neighbours moved in, causing relentless noise and smells which infiltrated the walls of her flat. The barrage of sounds and smells were not just nuisances, but a physical assault on her senses, pushing her into a state of overwhelming distress. The effect was so great that she was admitted to hospital. Once discharged, the once manageable tasks of daily living became too much. The sensory experiences were too much for Emily and once again she found herself sofa-surfing, a position she never thought she would find herself in again.

At work, the situation wasn't any better. Bullying by her colleagues, who took advantage of her differences, forced her to take sick leave and eventually, she left her job altogether - exacerbating her instability further. Emily found herself retreating further into silence. Words, once a tool for expression, were lost. She became mute, unable to articulate her distress - a condition known as selective mutism, which isolated her from any potential support.

It was during this time a turning point came - she was diagnosed as autistic. This diagnosis, while late, offered a lens through which her experiences, needs, and the challenges she faced could be understood more clearly. It was a revelation that explained much of her life's struggles and her acute sensitivity to her environment. With this new understanding, the council intervened, attempting to navigate the complexities of providing support tailored to her specific needs as an autistic individual.

Yet, the gap between the assistance provided and Emily's specific needs was vast. The council, though well-intentioned, couldn't fully grasp the nuances of her situation. Emily struggled to attend meetings with her support workers, as often these meetings were held in noisy cafes with strangers, triggering intense stress and anxiety. Consequently, she missed out on crucial support. Emily knew her requirements weren't just preferences, but necessities for her well-being: a quiet environment free from the sensory overload.

The Toolkit

Emily’s story reflects broader issues affecting many autistic people. While research is still in its infancy, a small body of research suggests that homelessness disproportionality impacts autistic individuals. While the prevalence of autism hovers at around 1% of the general population, studies have shown that the prevalence of autism in homeless populations is approximately 12 times greater. However, this number is likely to be much higher, for example, when we take into account the broader view of homelessness, being more than just rough sleeping, and encompassing any form of unstable accommodation. Moreover, like Emily, the journey through homelessness can be hidden e.g. in the form of sofa-surfing, which is referred to as “hidden homelessness”, and results in even more challenges to accessing support from services.

This increased risk of homelessness in autistic populations has been suggested to be due to:

• Socioeconomic disadvantage across the life course, such as difficulty maintaining employment;
• increased risk of social exclusion, and
• barriers to accessing homelessness services.

For autistic women, the path through homelessness can be even more challenging, with women being more likely to hide, or mask, their autistic traits in order to fit in (camouflaging), often resulting in less support as they “appear to be functioning” . Autistic women are also at a higher risk of exploitation or abuse, which is a known predictor of homelessness in women.

In addressing the unique challenges faced by autistic individuals, an Autism and Homelessness Toolkit was developed and recently updated – in a project led by Dr Georgia Lockwood Estrin at the University of East London, and funded by Autistica. This updated Toolkit, being launched for Autism Awareness this month in April 2024, provides practical advice to service providers to help them better understand their autistic clients’ needs, and to help them to provide more effective support. The Toolkit places a significant emphasis on insights gleaned from co-production workshops, where stakeholders - including autistic individuals with experience of homelessness, service providers, researchers, and many others came together to discuss the service needs of autistic individuals who experience homelessness. The Toolkit introduces information about autism, with a new section that places emphasis on presentation in women – a subject otherwise that has received little to no attention. It also provides information on burnout, sensory overloads, shutdowns, and co-occurring conditions, which may exacerbate vulnerability to homelessness and exiting homelessness. The Toolkit discusses the concept of masking or camouflaging, where autistic individuals might consciously or unconsciously hide their autistic traits to blend into social situations. Whilst this may be considered a coping mechanism, masking can lead to increased stress and mental health challenges, and potentially increase risk or prolong homelessness experiences, making it a critical area of understanding for service providers.

By expanding on these topics, the Toolkit aims to improve service providers' practical understanding of autism. The goal is to foster a more inclusive and supportive environment that recognises and responds to the nuanced needs of autistic individuals. Through this update, the Toolkit aims to begin bridging the gaps in service provision and ensure that autistic individuals receive the effective support they deserve and need.