When I approached my local council for help to make our home accessible for my disabled daughter, it was pretty clear to everyone what was required. She relies on a wheelchair, so she needed level access to the front door, a downstairs bedroom and bathroom, no steps anywhere. While no-one would suggest that people with physical disabilities get all the support they need, it’s hard for local decision-makers to argue that a person who uses a wheelchair doesn’t need their home to be wheelchair accessible.
When disabilities are less visible – but needs are no less great – it’s much harder for families to get the help they need. Autism is an example of a ‘hidden’ disability, where a person’s needs may not be immediately apparent but the consequences of not meeting them can be far-reaching.
Autism is a lifelong disability which affects how people communicate and interact with the world. Every autistic person will have their own strengths and face varying challenges, often including high levels of anxiety and stress. This can have an effect on their behaviour, which in turn has an impact on their family and the people they live with.
Autistic people often feel safest and most secure at home. Their home environment is therefore vital to their wellbeing, but it may not always work well for them and their families.
Housing adaptations enable people to continue living in their own homes. Research suggests this can also result in significant savings to the public purse, primarily by avoiding the need for costly local authority care.[1]
Autistic children and adults can get financial assistance for necessary adaptations from their local authority – for example, through disabled facilities grants (DFGs) – or from charitable trusts. But access to this type of assistance depends on these organisations having a good enough understanding of what is needed and why it matters – and families tell us that this understanding often isn’t there.
Families apply for assistance with adaptations for a variety of reasons. Many autistic people struggle with sensory overload. Background sounds that other people might be able to ignore or block out, like traffic on a busy road outside, can cause high levels of anxiety or even physical pain, which means they may need a home that is noise-proofed. Others may respond to intense stress by trying to run away or have a tendency to wander off. They need their home to be more secure, to keep them safe. Other families often simply need more space, so that the autistic family member can have quiet space when they need it, and others – such as siblings – gain much-needed private space for themselves.
Occupational therapists and other professionals advising families and decision-makers on how to adapt a home successfully need to consider a number of different things. These include the autistic person’s daily routine; their ability to look after themselves and any support they need with this; their reactions to various sources of sensory stimulation; anything that is likely to trigger anxiety; and their awareness of danger and personal safety. To make the right adaptations and identify the changes people may need, it’s vital that they are properly trained in autism.
Recently, the Government made it clear in an answer to a parliamentary question that disabled facilities grants should be considered for people who have an autism diagnosis. In an answer to a question tabled by Kerry McCarthy MP, the housing and local government minister Luke Hall said: “The Government is committed to helping people to live independently and safely in their own homes.” Autistic people and their families depend on local authorities making this happen.
Find out more about autism by visiting autism.org.uk
[1] Clements L & McCormack S (2017), ‘Disabled children and the cost-effectiveness of home adaptations and disabled facilities grants: a small-scale pilot study’, School of Law, Leeds University/Cerebra.
