‘The domino effect’: pathways in and out of homelessness for autistic adults

Abstract

Autistic adults may be at increased risk of homelessness due to the association between autism spectrum disorders and poor socio-economic outcomes. In particular, social vulnerability, unemployment, and difficulty interacting with services can be catalysts for homelessness, compounded by lack of diagnosis and appropriate support. This article presents the narratives of two autistic adults, known as ‘Max’ and ‘Peter’, who had experienced homelessness. They explain the factors which led them to become homeless and those that aided their rehabilitation. The article argues that whilst Max and Peter were susceptible to the socio-economic disadvantages which affect adults with autism in various ways, the resilience and determination displayed in their narratives countered traditional stereotypes of resistance to change. Furthermore, it is suggested that homelessness is not an outcome of autism, but of the disabling barriers autistic adults face throughout their lives.

Keywords:

• autism
• homelessness
• pathways
• socio-economic disadvantage
• narrative

Background

Homelessness has increased significantly in the United Kingdom over the last eight years. Rough sleeping has seen an ongoing upward trend and accepted statutory homelessness claims were 44% higher in 2017 than in 2010 (Fitzpatrick et al. 2017). Homelessness can result from a multitude of personal and structural factors such as loss of employment, relationship breakdown, or mental illness. Unfortunately, many of these circumstances are also associated with autistic adults in the United Kingdom. At 16%, full-time employment rates for autistic adults are exceptionally low, and 70% of autistic adults say they are not getting the necessary support from services (National Autistic Society 2017). Furthermore, many adults with autism spectrum disorders (ASD) do not have a clinical diagnosis, which brings complications in terms of how people are understood and supported. It is perhaps unsurprising, then, that emerging research claims a disproportionate amount of people with ASD experience homelessness, but that many of these individuals are undiagnosed (Pritchard 2010; Campbell 2015).

As part of a wider study (Stone 2017), I had the privilege of meeting two men who identified as autistic and had experienced homelessness. Known here as ‘Max’ and ‘Peter’, they shared with me their life stories, providing insight into the events which led to their homelessness and demonstrating that it is autistic people who are best placed to identify the disabling barriers they encounter.

Pathways to homelessness

Many autistic people are vulnerable to social isolation, bullying, and abuse. Both Max and Peter had experienced bullying from a young age and had been ostracised by their peers. They attributed this to differences they perceived between themselves and others:

“The main reason I was bullied is because I was different and I didn't interact in the same way, I didn't have the same responses – I was weird and therefore they ostracised me.” Max

These experiences led to reduced social support networks and over-reliance on a small family unit which continued into adulthood. Peter reported living in the family home until the age of 39 years, and both individuals relied on family for some level of financial support. In the event of relationship breakdown, such as the death of a parent or disagreement with a family member, both Max and Peter were forced to move out:

“She got so fed up she said that she had to force me to leave because she couldn't keep me there anymore, I wasn’t ‘doing’ anything.” Max

Without support, Max and Peter internalised their social difficulties. Max’s experiences of social exclusion had led to a lack of self-confidence and increased social anxiety. Peter, who had experienced the loss of close family members at a young age, noted the deep psychological effect this had on him. He described how he used masking as a coping mechanism:

“Just sort of put that image, projecting an image, one person at home, did an appearance, when they are out of home. Sort of turn myself into someone else, it's like an alter-ego in a way. A bit difficult, but it's sort of like acting really.” Peter

Max and Peter were further affected by the difficulties they encountered gaining and maintaining employment. Although both had employment experience, they had struggled to hold down long-term positions:

“I managed to get the job through sheer luck, I don't know how I managed it, I was there for three months – it wasn't until many, many years later that I actually managed to hold down a job.” Max

Max and Peter cited anxiety around social interaction, redundancy, and difficulties meeting role requirements as reasons for losing or leaving employment. Once unemployed, both relied on some form of benefits, and as Peter’s quote exemplifies here, the system could be unyielding and unsupportive:

“People got learning difficulties, how do they know how to handle money? When you apply for unemployment they practically give you the krypton, what do you call it, too many questions to answer, too many technicalities, too much bureaucracy. It’s like the unemployment form is a book!” Peter

Without adapted support Peter could not complete the application process and, knowing he could not afford the next month’s rent, pre-emptively moved onto the streets. Although this was the event that triggered his homelessness, Peter did not attribute it as the overall cause. He described instead a “domino effect” of events which led to his becoming homeless. Similarly, Max discussed relationship breakdown initially leading to him leaving home, followed by difficulties holding down employment and ‘burning bridges with landlords’ as contributing to his becoming homeless.

Experiences of homelessness

“I had become homeless, and that was the tail end of February, and I remember because the ice, the ground was frozen at that time so it was quite cold – that is when I bought the tent, it wasn't very good, it was incredibly cramped, it was small, because it was one of those really bad like shopping bag like, emergency tents, and through moving and stuff like that I had poked holes through it so when it rained I got soaked – I had two pancakes a day and I lived off of water during those times, yeah it was not fun, because I went from something like ten stone to, down to six.” Max

‘Homelessness’ can describe various living arrangements such as ‘sofa-surfing’ or staying with friends and family. Due to their limited support networks, Max and Peter did not experience these types of homelessness, and began rough sleeping or staying in shelters after loss of tenancy. Max’s experiences demonstrated how periods of rough sleeping can have dire consequences on physical health, including malnutrition and exposure-related health issues. Crime and violence were also often experienced. Max described rocks being thrown on his sleeping area, and Peter explained how high rates of theft at certain night shelters increased feelings of fear and insecurity. Such experiences led to them feeling further removed from society, and during these periods Peter reflectively described himself as “see through” and “less human”. In order to deal with the difficulties of rough and shelter sleeping, both established daily routines:

“I would always go to the library in the morning, I would always go walk around during the mid-afternoon, and at night I would always walk around the park area and then go to bed, every day. unless it was that Monday and Thursday then I would always go to [service provider], but other than that I would always do those things. I think it was a bit of order in my life of chaos.” Max

Although these coping mechanisms worked favourably for Max and Peter, there is a wider worry that reliance on routine can become a barrier to exiting street life. Whilst Max and Peter had been homeless for less than a year, Pritchard’s (2010) project found high levels of ASD in entrenched rough sleepers, who had experienced periods of homelessness averaging 10.8 years. Pritchard suggests that some autistic people may find it easier to be on the streets than deal with daily responsibility, associating this with the degree of control autistic participants felt they had over their lives. Pritchard’s findings are supported by anecdotal reports from homelessness services which suggest autistic rough sleepers create fixed routines which help them feel in control and reduce anxiety (Innovation and Good Practice Team 2015).

Pathways out of homelessness

At the time I spoke to them, Max and Peter were living in a residence designed to rehabilitate homeless people and provide them with employment opportunity. Although the heterogeneity of autistic symptoms should not be overlooked, the structure provided by this organisation was suited to both individuals, who found comfort in known routine:

“It’s helped me sort of plan things out in a way, just provides a sort of a structure – nine o'clock you start work, five o'clock it's time to go home. Twelve, lunch and I get back home, there is James in the kitchen that cooks food for everyone, six o'clock is dinner.” Peter

Furthermore, Max and Peter were able to re-establish connections with their families and the wider community. For Max, this had been facilitated by his recently receiving an autism diagnosis, and he reflected how an earlier diagnosis may have allowed him to access other areas of support:

“When I found out about my diagnosis I was like, yeah that makes a lot of sense because I didn't want to go round saying I have got Asperger’s before I got diagnosed – I could have gotten help with paying rent and stuff like that, making sure I am getting stuff done, even making sure that I keep down any job that I may get.” Max

Whilst the necessity of autism labelling is highly contested (Richards 2016), for Max the label had practical advantages in terms of life management and self-understanding. Furthermore, the level of reflexivity the diagnosis provided alleviated the blame he had assigned himself for perceived failures, as he reflects on his school days here:

“As far as I knew I was just a stupid idiot who didn't learn well.”Max

When discussing their periods of homelessness, Max and Peter showed resilience in the face of difficult and often dangerous situations. Their determination to take control of their lives, and to do so independently, is reflected in the fact that neither of them disclosed their homelessness to family members:

“I wanted to do it on my own, to prove to myself that I can get up and go as it were, so I didn't tell her and she didn't find out until, well, after [I] had stopped being homeless.” Max

Conclusion

Woods (2017) argues that despite the United Kingdom’s wide adoption of the social model of disability, it has not permeated the autism field. He describes a systematic oppression of autistic individuals which is reflected in the social and economic disadvantages experienced by Max and Peter in many aspects of their lives. These disadvantages were catalysts for Max and Peter, significantly contributing to their becoming homeless. Although they did not have an autistic label for most of their adult lives, Max and Peter experienced difficulties resulting from their perceived status as ‘different’, and society’s inability to accommodate this difference. This suggests that the stigmatisation surrounding autism does not solely arise from its categorisation, but from society’s lack of acceptance of people who do not meet contemporary constructs of normal.

Awareness of the disproportionate amount of homeless people with ASD in the United Kingdom is beginning to rise. Initial recommendations for homeless services include improving communication, structuring service delivery, and providing visual information (Pagler 2011). This article, however, suggests more must be done to assist autistic adults to mitigate against experiencing homelessness. These are difficult changes to make, as they concern addressing the inequality of opportunity that autistic adults face in society today. Challenging the status quo and demanding change is critical in order that autistic people do not continue to be over-represented in the homeless population.