Considering and meeting the sensory needs of autistic people in housing

 Co-produced with a group of people with lived experience

This project was commissioned in 2020 from NDTI by the Care and Health Improvement programme and co-produced with a group of people with lived experience.

In recent years, a greater understanding of autistic people has emerged. New research and years of collaboration with autistic people of all kinds has changed almost everything society thought it knew about autism. We now know that autistic people are in every role in society, whether it is a volunteer at a charity, or as a front-line healthcare professional. Enabling autistic lives does not just mean improving care home settings but considering the environments for the vast majority of autistic people who live and work in everyday places. We are also more aware of the diversity of autistic people, and are locating far more who are older, female, part of the Black, Asian and Minority Ethnic communities, and part of the LGBTQ+ communities.

Sensory differences

One of the most important findings is that most autistic people have significant sensory differences, compared to most non-autistic people.  Autistic brains take in vast amounts of information from the world, and many have considerable strengths, including the ability to detect changes that others miss, great dedication and honesty, and a deep sense of social justice. But, because so many have been placed in a world where they are overwhelmed by pattern, colour, sound, smell, texture and taste, those strengths have not had a chance to be shown. Instead, they are plunged into perpetual sensory crisis, leading to either a display of extreme behaviour – a meltdown, or to an extreme state of physical and communication withdrawal – a shutdown. If we add to this the misunderstandings from social communication with one another, it becomes easier to see how opportunities to improve autistic lives have been missed.

If we are serious about enabling thriving in autistic lives, we must be serious about the sensory needs of autistic people, in every setting. The benefits of this extend well beyond the autistic communities; what helps autistic people will often help everyone else as well.

This executive summary (and our full report) guides teams on how to consider sight, sound, smell, and touch, when designing or commissioning spaces. In the full report we provide detailed discussion of the different internal and external senses and how these can be experienced differently by autistic individuals. Here we focus on how these differences might be considered within housing environment, as well as the challenges of shared spaces, the joys of outdoor spaces and pets for some, and the importance of a personal space and somewhere for the person’s key possessions and hobbies. Thought is also given for matters of security and creating a real sense of belonging. A summarised checklist (provided as a useable table in the full report) acts as a starting point for discussions and audits, building projects and housing searches.

Finally, the involvement of autistic people in reviewing and changing the sensory environment will support the identification of things that are not visible or audible to their neurotypical counterparts. We strongly encourage this wherever possible.

Homes and housing for promoting autistic wellbeing

The most important thing about autistic housing is to note that it’s a sanctuary from the outside world. Being outside means exposure to all sorts of sensory assault, especially in places shared with other people. Home needs to be the place where we can relax, unwind and work off that stress. Home also needs not to cause stress so it needs to be easily navigated, protection from sensory stimuli and where wanted, exposure to agreeable sensory stimuli. Home needs to aid those of us with significant issues in executive dysfunction and give us scope to be creative."

Rachel

International human rights law recognises everyone has a right to an adequate standard of living, including adequate housing. This includes security of tenure, accessibility and protection against threats to health. UN Habitats (2014:4) state that ‘housing is not adequate if the specific needs of disadvantaged and marginalized groups are not taken into account’. For many autistic people, this means a consideration of the sensory environment.

The right home environment is essential to health and wellbeing, throughout life. Our homes are the cornerstones of our lives. Housing affects our wellbeing, risk of disease and demands on health and care services. We need warm, safe and secure homes to help us to lead healthy, independent lives and to recover from illness."

Public Health England (2018:1)

This summary and our full report aims to provide information about how to consider and meet the sensory needs of autistic people in housing. Other publications (such as Building the Right Support and Building the Right Home) offer guidance on the role of local services and commissioners in understanding, planning, and meeting housing needs. They provide information about the range of housing models and finance options available. Many of the changes and adjustments that are highlighted in this report are not costly or challenging to implement. However, for many people, this will be a change in approach that understands autism as primarily a sensory processing difference rather than a behavioural disorder.

As well as considering buildings and houses, it is important to focus on the individual and their interests, personality and needs to transform the space into a home. We consider some general themes and suggest some questions to explore with individuals to identify what would work best for them.

Being out in the world is frequently exhausting, so being able to come home to a space that is relaxing and reviving is essential to me. The garden recharges me. I can sit there or do some weeding or planting, listen to the birds, read under the trees. The curves and softness of the plants are soothing. Having space to escape to in the house means, again, the ability to decompress as well as places to recharge. So, a low arousal environment is key for both.

Ruth

We hope that this summary and report will support autistic people, their families and housing and support providers to realise their own ambitions and those that are set out by in the Bubb report and in the NHS long term plan – a comfortable home in the community that is built to last.

Autistic sensory differences

Understanding the sensing and perceptual world of autistic people is central to understanding autism.

Our five senses are how each of us understands everything that isn’t us. Sight, sound, smell, taste, and touch are the five ways – the only five ways – that the universe can communicate with us. In this way, our senses define reality for each of us… What if you’re receiving the same sensory information as everyone else, but your brain is working differently? Then your experience of the world around you will be radically different from everyone else’s, maybe even painfully so. In that case, you would literally be living in an alternate reality – an alternate sensory reality."

Temple Grandin and Richard Panek (2014:70)

To support an understanding of autistic sensory differences and needs when in comes to housing, it is helpful to first understand the role of our internal and external senses. In the full report we provide further, more detailed information about how autistic people experience physical and sensory inputs. Here, we provide a brief overview, then summarise our key suggestions which may be useful in supporting autistic people to flourish in their home environments.

Everyone has eight sensing systems: the first five being the familiar sight, hearing, smell, touch and taste. These five give us information about the world outside our bodies. Three internal sensing systems give us information from inside our bodies – our vestibular system (coordinating movement with balance), proprioception (awareness of position and movement of the body) and interoception (knowing our internal state including feelings, temperature, pain, hunger and thirst). Although not all the external senses are equally affected by the physical environment, we consider them all – as they collectively add to the ‘sensory load’ that many autistic people often experience. Any sensory input needs to be processed and can reduce the capacity to manage and process other things.

My sensory needs fluctuate. Sensory overload can disable me for a couple of days. I need to lie down in a dark space. I always used to think it was migraines."

Emma

No two autistic people have the same sensory profile, but most of the time our external senses are hyper-sensitive, and our internal senses are hypo-sensitive. This means that we are normally getting too much information from what is around us (sight, sound, smell, touch and taste) and not enough from within our bodies (balance, position and movement and processing feelings). We must deal with this imbalance. This takes effort and causes us to become sensorially and cognitively overloaded very quickly, with a lack of awareness of how we are being affected internally. This leads to overwhelming sensory and emotional overload. An autistic person will be aware of what they are sensing to a very high degree. They must pay attention to everything they are aware of with no means of prioritising or lessening the intensity of a sensory input. We notice detail that most people miss, and we have to make sense of all these details before proceeding. We can develop ability to mask this in social interaction and appear to be OK with processing through life and interactions with people. However, this is just what it is, masking. Masking comes at a price in overload, tiredness, difficulty moderating mood, difficulty concentrating and needing extended periods of rest and low stimulation environments to lower our sensory arousal and be able to process all that has happened and where we have been.

Richard

As many autistic people process one thing at a time, sensory stimulation can stack up. As the brain’s highways become congested, there are repercussions throughout the entire neural network. This can lead to headaches, nausea and the fight and flight response, this is what causes many meltdowns and shutdowns.

Sensory overload, to me, is exhausting, so living in a low arousal environment is an essential part of maintaining good mental health and emotional regulation for me. Part of the solution is feeling safe."

Ruth

Video: Sensory Overload (Interacting with Autism Project)

This video illustrates how overwhelming sensory environments can be.

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