In the drive towards supported living for adults with autism,the layout of the accommodation can be overlooked - but good design can be crucial in enhancing a person's quality of life, says Andrew Brand.
For adults with autism, the environment in which they live can have a profound impact on their wellbeing. If it does not suit their needs, it can exacerbate behaviours that may inhibit their progress and diminish motivation and confidence.
But housing that is designed around them and their condition has been shown to havea positive effect, helping them to feel more settled, enhancing their confidence and motivation to take part in their community.
It was with this in mind that the 'Living in the Community' project was launched in 2009 to explore how design might improve residential accommodation for adults with autism. The project is acollaboration between autism charity The Kingwood Trust and theRoyal College of Art Helen Hamlyn Centre for Design, an inclusive design and research centre.
The research involved visits tosupported living residences, workshops with people with autism,interviews with support workers and clinical professionals, and areview of relevant literature including biographical works, whichprovided insightful and lyrical accounts of autism that complemented medical characterisations of the condition. To provideguidance and support for the project, an expert reference group ofscientists, parents, architects and designers was established.
Kingwood supports adults with a range of abilities to live indomestic-sized properties, close to local shops and services, asindividuals or in small groups. The research team were invited intosome people's homes to observe how the location, layout andinterior design of the buildings affected their quality of life.
Researchers started by shadowing service staff and observing how people aresupported in their homes. Staff members talked openly about theirexperiences and the people they support and from their stories and firsthand observations, insights were drawn that would be usedlater to develop a set of design themes
Many of the people whosehomes were visited are wary of strangers so the researchers triedto build rapport with individuals by joining them in dailyactivities such as cooking, cleaning, gardening, going grocery shopping and to the bank, as well as social events in people'shomes and in their local communities.
To get feedback on specificaccommodation issues, two workshops were run with adults withautism. In these sessions, participants were invited to comment onand design their ideal home environments. Participants expressed needs for access to outdoor spaces and a connection to otherpeople, but in spaces that enable the individual to control thelevel of social interaction.
Many participants also described their sensory perceptual differences and how they were affected in theirdaily lives by these unusual responses to stimulation such ascolour, patterns, noise and odours.
One theme that came throughstrongly was that participants wanted freedom to personalise theirspaces and in particular their bedrooms. As one participantremarked; "If you've got autism, in my experience, you're likely tospend a lot of time in your bedroom because that's where you feelsafest, so what's in your bedroom and what you can see through thewindow is your world."
There was overwhelming evidence to show that the design of residentialaccommodation can profoundly impact the health and wellbeing ofadults with autism. In buildings that had been specificallydesigned or adapted for their residents, people displayed higherlevels of confidence and independence and fewer accounts ofchallenging or complex behaviour.
In the right settings,individuals' motivation and willingness to engage in daily tasksand social activities had been increased. And in all cases, goodbuildings had been achieved by involving service providers, supportworkers, parents and individuals with autism in all stages of thedesign and build process.
A shift from institutional care tocommunity-focused, social models of support, with emphasis on theneeds and wishes of individuals, was seen throughout the researchvisits. But in aiming to provide normal home-like environments, the requirements of staff had been often overlooked and this affectedtheir ability to provide appropriate levels of care and support. Itwas noted that residential buildings are foremost people's homes,but they are also places of work.
Homes in which people cohabitatedalongside others with similar needs, routines and complementarysensory differences were more successful in enhancing theresidents' quality of life.
Invariably the design of residential buildings make a difference to the quality of life of adults withautism, but it cannot be considered in isolation. A holisticapproach needs be taken that includes the design of people-centred support plans, models for financing accommodation, inclusion in thecommunity, as well as meaningful employment and help in developingfriendships, relationships and interests that bring meaning and purpose to everyday life.
Design themes and recommendations
From an analysis of what had been observedand recorded during the research, key project findings and a set offour design themes were defined.
The design themes are expressed interms of qualities and performance criteria that are critical toimproving housing for adults with autism. The themes are intendedto be comprehensive and exclusive from one another, and arepresented in a way that aims to inspire creative responses ratherthan providing prescriptive rules. Like all good people-centreddesign, some of these qualities are specific to autism, but mostwould benefit the wider population.
In summary, the design themesare:
- If home environments are designed to help residents grow anddevelop interests and life skills, their confidence and self-esteemcan be enhanced
- By providing consistent, low arousal environments in whichstimulation can be adjusted by residents, triggers of agitation andanxiety might be reduced
- Robust environments help to protect residents and staff andlessen the physical and emotional impact of unintended use
- Providing appropriate tools for staff can help them to deliverquality, people-centred care and support.
These themes were used as a springboard for developingrecommendations and concepts for designing or refurbishingresidential accommodation. Recommendations included seeminglyobvious but, as the research showed, potentially overlookedmeasures such as to beware of locating buildings next to busyroadways or airports - especially for individuals withover-sensitive hearing. More insightful recommendations includedhow the layout of a building might aid understanding and helpresidents to engage in social activities on their own terms.'Living in the Community' also contains number of design conceptsfor supportive living environments. Interventions for main livingspaces such as a kitchen, bedroom and communal room are suggestedalongside facilities such as bathrooms and toilets. One of the moreintriguing behaviours observed during visits to people's homes washow individuals would often reside or withdraw to corridors ornon-functional spaces and how staff also used these spaces forde-escalating and managing certain behaviours. It appeared thesespaces are as important as functional rooms so the design conceptsare presented as part of a single conceptual building todemonstrate how travel routes and connecting spaces might bedesigned to accommodate these behaviours.
A large number of unmet designchallenges emerged from the first year of the project, particularlyhow communication, sensory differences and control of environmentsin domestic settings might be fulfilled. More research needs to bedone to understand ways in which people with autism perceivespatial relationships and connect contextual information withdetailed information. This work might inform future studies thatinvestigate how architectural principles and elements, such ascolour and texture or embedded technologies could be used to helpadults with autism improve perception and understanding of theirdomestic environments and the objects within. In the current phaseof this project, which is due to end in September 2011, researchersare looking at how to identify, map and design for individualsensory preferences of adults with autism. The aim is to generatemethods that will help people to manage their relationships withtheir home environments more effectively and enhance socialinteraction and communication. The research is being used byKingwood now in order to redevelop two buildings that will housenine adults with autism. A detailed account of the first 12 monthsof the project was published as a handbook, which is available fromthe Helen Hamlyn Centre for Design or as a download from the Centre'swebsite.
Lucy is29 years old. Seven years ago, she moved into a three-bedroom houseacquired through a housing association's shared ownership scheme.The house was selected because it had three bedrooms; one toaccommodate guests, one for staff, and a bedroom for Lucy. It alsohad a straight staircase for her physical disability. The locationwas perfect for Lucy, providing proximity to shops, a pub shelikes, a railway centre and plenty of space. Lucy is a talentedfilmmaker. Using a computer for video editing, she made a filmabout her moving house, which was shown at her service provider's AGM and at a Valuing People conference in London. "I've got lots ofcolours in my house, and my stuff and all my lights, a notice boardand a picture of Thomas the Tank Engine," she says. "This placemakes me happiest." Lucy likes to go out and is interested inrailways. She has model trains and railway illustrations in herroom. She is very sensitive to sound and has perfect pitch. She maydecide to wait outside a shop if it is noisy. Car engines leftrunning and fans are a source of stress but she can manage her ownvacuum cleaner and uses this daily to clean the house.
Lee is 32 and lived with a fosterfamily for most of his life. His foster parents became adultplacement carers when Lee turned 18 enabling him to remain in thefamily. But as they entered their 70s, Lee's foster parents becameconcerned for his future welfare and sought alternativeaccommodation and support services. In 2008, Lee took on his owntenancy and moved into an individual flat in a new supported livingresidence. The transition to Lee's new home was managed carefully.Discussions about what Lee was going to take with him and whatcolours and furnishings he would like were started several monthsbefore the move. Closer to the move, Lee visited the newdevelopment with members of the support team. Together they agreeda care plan and enjoyed planning for the future. Lee makes surethat his support workers take him out for food, especially lasagne.He enjoys going to the local pubs and watching football with hisfoster dad. Lee experienced periods of anxiety, leading tochallenging behaviour at times. But in his new home, Lee is relaxedand settled and has shown a growing independence. He regularlyattends a local horticultural group, taking pride in ensuring theplants are watered, and has recently opened a bank account.
About the author
Andrew Brand is a research associate at the Helen Hamlyn Centre for Design
This article first appeared in Learning Disability Today, July 2011 issue.