6. Housing and Independent Living
More than 200 participants, or approximately 31 per cent of the total number of people who completed our questionnaire, raised the issue of housing and/or independent living. As with other themes, participants raised housing and independent living under each of the strategy's outcomes, so that housing and independent living are clearly seen as being enablers of a healthier life, choice and control, independence and active citizenship. That said, most participants raised housing and independent living under the outcome 'independence'. Again, as with other themes, clear subthemes are evident in the responses, including awareness and training and housing options.
While most participants felt that 'independence' within the context of housing and independent living was a realistic option for autistic people, some disagreed. One parent, for instance, while acknowledging that a few autistic people may 'possibly manage in supported accommodation', said this was unrealistic for their own daughter: 'Yes of course I would love my daughter to do things others of her age do, and when she grows up to have her own place. The reality is this will probably never happen'. Other participants touched on the nature of 'independence' itself, with one describing it as a 'myth', since every person relies on services of one kind or another. Another suggested that very few people, whether autistic or not, live fully independent lives. Still another said we should 'stop acting like autistic people haven't already been living independently for millennia; also may consider why we're even talking about "independence" in a society that is extremely interdependent, where literally nobody is independent'.
Awareness and training
As in other themes, a large number of participants highlighted the importance of raising awareness, including through appropriate staff training. One said these could be improved by establishing autism-specific housing officers. Such suitably trained staff could help autistic people access local community support and networks in the area in which they live. Another participant suggested the creation of a booklet aimed at housing staff which 'pre-empts issues experienced by autistic adults'. Since 'agencies such as housing…can feel out of their comfort zone', it is important their staff have guidance on how to support an autistic person, as well as information on positive practical steps they could take in providing that support.
Lack of staff training and awareness can negatively impact housing decisions and personal outcomes. One participant recalled their poor experience of support because their support workers had 'little or no training [in autism] and very little motivation'. The support worker's employer, in turn, had no quality assurance measures in place, failing both their employee and the participant. Another participant recalled the difficulties they had in accessing basic information about potential housing options for their autistic son:
When I asked my 19 year old autistic son's social worker about planning for a future where he can live in supported accommodation with as much independence as he can cope with, she told me this was not something the local authority would provide, and I would have to make my own inquiries with local housing companies. She was not even able to provide me with a list of housing companies. I understand that the local authority are not in a position to provide the finances for this, but a little help with investigating it on the basis that my son receives benefits and could potentially self-fund in supported accommodation would be helpful."
Another respondent said professionals' lack of awareness of autism meant they were homeless for 19 years:
I was told by my local council I would never get to the top of the list because I did not fit any of the criteria. On one occasion, I was told by the head of my local housing department, I would not get [a] disability house because I did not require a wheelchair. In addition, if I did get a change of a home, it would be a only a flat in a block with other people, because I did not have physical limitations for housing.
A large number of participants raised issues about the availability and types of housing. Several of these offered generic comments, including:
- 'More provision of supported housing'.
- 'Ensure there is adequate supported housing'.
- 'Supported housing'.
- 'Ensure appropriate housing and housing support is available when needed'.
- 'Access to supported accommodation where required'.
One participant, in stating the need for more options, explored the idea of independent living itself, which can mean more than supported living in a flat; it can also mean doing so in residential setting. Another participant said there needs to be more 'types' of accommodation, which can include support provided while living in [one's] own accommodation or in a residential setting'.
Some participants offered suggestions about increasing housing supply for autistic and disabled people more generally. Every local authority, for example, could allocate between 10 and 15 per cent of new and current housing stock to autistic individuals or reserve a portion of all new builds for people disabled people and the elderly. Housing builders should be willing to build 'smaller units at subsidised costs to give the opportunity for living independently…or [build] units where young adults can be supported to live independently'. One participant noted the 'patchy' provision of supported accommodation across the country and said 'every local authority should [therefore] have benchmarked services for people with autism and ring-fenced funding'. Several others said money needs to be invested in affordable and accessible housing:
- 'By funding independent living'.
- 'Properly fund appropriate accommodation facilities throughout Scotland. Something similar to "sheltered housing"'.
- 'We should continue to support independent living for adults with autism by increasing funding for supported living, and providing more properties for this. At the moment opportunities for this type of accommodation seem to be being cut and adults with ASD are being forced to live in residential care homes instead'.
- 'Make the services fit the individual and ensure adequate funding in place to house people support those who wish to lead independent lives'.
- 'More money needs to be put into these services. Supported living for all'.
Several participants offered examples or suggestions in light of the particular challenges that an autistic person may face in the context of housing and independent living. One said 'most autistic people like to have their own space and find it very difficult to share with others', so that 'flats or housing complexes with wardens/support workers would be a good idea'. Another participant echoed this suggestion and said 'small settings of self-contained living flats' should be available with a warden on call who could offer support with day-to-day tasks. Others offered more general suggestions:
- 'Do sheltered housing for autistic people'.
- 'Build more houses with caretakers to look after them'.
- 'Provide suitable housing, perhaps sheltered housing schemes with care teams on hand if needed' .
- 'Provide increased access to supported housing similar to supported older people's housing schemes'.
- 'Possible "sheltered" housing developments'.
- 'There is a need to build low cost accommodation which will cater for their individual needs i.e. supported accommodation where there are key members of staff who can support them in their day-to-day lives'.
Some participants discussed the sensory problems that some autistic people face and the adjustments that could be made to ameliorate them. One said, for example, that social housing should be available that 'isn't in the form of flats' because sensory issues bring 'constant change' - autistic people 'need somewhere quiet, a quiet area and flat' in which they can relax.
Participants raised the importance, more generally, of adapting or changing a house to a suit an autistic person. One said a failure to make adaptions to current housing provision means some autistic people are living in 'non-adapted housing, which is unsuitable. Technology has a role to play here, with a few participants stating that more opportunities should be available for accessing technological solutions.
Several participants raised the issue of safety: autistic people should feel safe in the environment or neighbourhood in which they live. Making this a reality includes ensuring the autistic person lives close to their family 'so they have a good safety net, if not at least have someone checking in regularly to make sure they are doing ok'. Safety extends beyond the physical environment and can include unscrupulous behaviour on the part of others, including neighbours. A house should be kept as a 'safe haven' for an autistic person, where they can 'feel at home. One cannot suddenly allow a noisy family to become neighbours etc.. Screen checks need to be made for every nearby change'.
While participants spoke of the need for a 'safe' or 'quiet' space and the sensory difficulties many autistic people may have with, for example, living in flats, it does not necessarily follow that they should somehow be detached from the surrounding community. A number of participants noted the importance of the autistic person having access to and being able to take part in the local community, if they wish. Autistic people should be supported to be 'involved more in community events' and more should be done to encourage 'integration to communities'. Facilitating inclusion requires, as some participants noted, appropriate training for relevant staff and more public awareness of autism. As with other citizens, independent living for autistic people may mean 'living with friends, families and partners who autistic people have mutually dependent relationships with. For people with autism who have behaviour which challenges us (to the extreme) we must get better at providing good support within community settings'.
Independent living skills
Linked to the physical environment, whether the living space or wider neighbourhood, are the skills needed to live independently. Several participants stated that without these skills independent living would not be possible for many autistic people. For one participant the allied health professions ( AHPs) have a part to play here, particularly with autistic adults, so that AHPs may have autism-specific roles. For another participant there is a role for 'autism advocates', who would be able to 'either guide the autistic individual and/or mediate to secure appropriate supports for independent living'. Similarly a system of 'buddies' could be established to support autistic individuals and to 'reduce the burden on their families'. Other participants offered more general comments about developing independent living skills:
- 'Teach living skills'.
- 'Skills to run a house'.
- 'Opps to develop independent living skills'.
- 'Opportunities to learn daily living skills need to be more widely available'.
- 'Ensure carers are given support/ training in how best to teach certain independent skills ( e.g. toileting, feeding, using public transport, communicating)'.
For several other participants the key to helping autistic people develop essential life skills lies in working with them from a young age. As such, teachers should 'develop a greater understanding of how to teach independent living skills and which skills are relevant to the individual's needs'. Other participants raised similar points:
- 'Taking time to teach from early age basic skills in food prep and shopping, also housework bed making etc. If taught as part of schooling repeated learning does instil a response and the child can pick up on this'.
- Those that can need firstly a good start at school by learning life skills - going out shopping with support, learning about money (if they are able), doing washing, cooking etc., also learning to keep themselves safe as these are some of people are the most vulnerable in our society'.
- 'Independent living skills to be taught from school age and beyond'.
- 'Ask the question of independent living at a younger age e.g. while still at school; ask if they want to live independently and what it'll look like for them'.
- 'Ensure that "independent living" is a key outcome for autistic children as they progress through school'.
In seeking to help autistic individuals develop independent living skills, it is important to keep in mind the autistic person's perspective or how they may react to such opportunities. One participant said that 'understanding' is essential because it may take a 'long time for things to click…or attendance may be patchy'. Motivation may be difficult for the autistic person and they may simply disagree with the direction being proposed. Again, an asset-based approach may be useful, using any special interests the autistic individual may have to sustain their motivation. What is important, in the round, is listening to and involving the autistic person in decisions that affect them. One participant suggested that a 'bottom up' approach is needed whereby people on the spectrum (and right across the spectrum) are included in any decision making. Another noted the imbalanced power relationship between providers and professionals and autistic people:
Many people [professionals]…are not good at enabling individuals, despite phrases such as 'patient-centred', 'individual care', 'integrating services' these are often used in an empty way. Many of these people do what they think the person with autism wants, not what the person with autism is asking for...Stop seeing people with autism as a problem and change the attitude of staff. You are not helping people if you tell them what you think is useful, if you say you will do something then don't do it, if there is no actual service available and string people along.
Participants also raised the importance of transitions, which take place throughout a person's life, so that it is necessary to plan 'well in advance' to ensure transitions to independent living are seamless rather than a 'traumatic necessity i.e. when a parent becomes infirm [or] dies'. Moves toward independent living should take place long before parents are unable to cope with the demands of caring. Yet, as another participant said, it is the very lack of suitable supported accommodation for autistic people that means more of them, of necessity, live with their parents. If the move toward independent living is not supported, it will likely fail. Lack of support, coupled with lack of appropriate housing may mean therefore that autistic people are unable to transition from the parental home to independent living: 'I am 27 and still live with my parents due to the fear of living away from home. I think there needs to be a lot more services/help in relation to taking that first step away from home and making your own life for yourself'. While support needs to be in place for the individuals, one participant noted it is also important that parents are properly 'trained' so that they can, in turn, support their child to 'gain the skills they need to live independently'.
A large number of participants discussed this issue of ensuring appropriate care and support are in place for the autistic individual. Participants again emphasised the importance of listening to and involving the autistic person in decisions that affect them. As one participant said, it is important to listen and understand that not all 'fits the one', and that independent living or moves towards it will affect each autistic person and their families in different ways. It is important to remember that autism is a spectrum and that one autistic person is different from the next, so that support should be 'tailored [and] and one-to-one'. Several participants noted that higher functioning autistic individuals may also need support. One said that while some may 'practically' run their own flat, they may nevertheless have difficulty dealing with other people, so that support around communication may be appropriate. Another said sometimes it is not simply 'about being able to wash and dress [but] can be more [about] subtle needs like encouragement [or] promoting to [go] out or try a new activity'. Support services should look to 'create' independence rather than a culture of dependency, but should also be available if the individual remains at home, be flexible and be driven by the individual themselves. Similarly, 'autonomy' should be encouraged: focus must put on the autistic person's strengths to better understand what they 'can do', with support in place for those aspects of their life where they may have difficulty. Support must be flexible and responsive to the autistic person's needs and the fact those needs may change. 'Sophisticated' assessments should be carried out periodically to ensure the 'right level of services':
When things go wrong in care packages, stop blaming the person on the spectrum. Reassess. Change the package. It's the provider's responsibility and when they fail they often plan the person's "behaviour" instead of looking at how they can change and improve their service.
As another participant put it:
Make sure regular updates and checks are made to make sure the services provided are still correct pathways i.e. sometimes circumstances can have a very clear positive or a very negative effect on a person. In those circumstances the type of independence given might need to change into more care when adapted; or the types of housing provided could be turning out incorrect.
Some participants noted that Self-Directed Support ( SDS) has a role to play in facilitating independent living. One said SDS must work 'effectively for people with autism', while another stated that autistic people often have negative experiences in accessing SDS because of:
Inadequate signposting, inaccessible information, poor assessment practices which are unappreciative of particular barriers which people with autism may experience, to procurement and contracting processes which fail to understand the needs of specialist providers or to adequately resource specialist provision.