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Raising awareness supporting families with Williams syndrome

Williams Syndrome 2

TFA is delighted to be working with the Department of Psychology at Durham University and INTU, who own and manage many popular retail destinations in the UK.  We’ve come together to raise awareness within the retail, tourism and hospitality sectors of the needs of individuals with a rare developmental disability. 

Many people have heard of Autism and will be aware of recent initiatives around the UK (and further afield) to adapt the environment to meet the needs of people who have this developmental condition – for example the introduction of ‘quiet hours’ or ‘autism friendly’ experiences within the retail, tourism and hospitality sectors. However, far fewer people will be aware of a rarer developmental disability that can also impact upon the ability to engage with social opportunities, visits to tourist attractions, or retail experiences; namely Williams syndrome. This new project is a collaborative endeavour between researchers at Durham University, INTU, Tourism for All, and the Williams Syndrome Foundation UK charity. The project is funded by Durham University. The aim of the project is to raise awareness of the needs of individuals with Williams syndrome and their families and produce a package of support materials for the retail, tourism, and hospitality sectors. 

Tourism for All is contributing to this guidance and will help promote the advice to the industry, as part of our aim to ensure tourism is for everybody. 

Williams syndrome is a relatively rare developmental condition that affects approximately 1 in 18,000 individuals (over 3,500 in the UK) and is caused by the deletion of a number of genes. Anyone can have a child with Williams syndrome as it is caused by a sporadic, randomly occurring genetic abnormality (which is detected with genetic testing). There are a number of physical complications that can be caused by Williams syndrome, such as heart problems, and both children and adults tend to be very short in height and have distinctive facial features. People who have Williams syndrome can also have mild to moderate learning difficulties that can impact upon the way that they learn, the way they understand their environment, and their communication with others. There can be vast differences between people who have Williams syndrome but here we provide information on some of the general characteristics for increasing awareness. 

Many people with Williams syndrome are socially outgoing and thrive on interactions with others, but this doesn’t mean that their social interactions are always appropriate. Therefore awareness of Williams syndrome is important so that we can accommodate the social interaction styles of people who have the disorder and provide them with appropriate support. A particularly endearing aspect of social behaviour in Williams syndrome is that it can make children and adults who have the disorder particularly empathetic and caring for others; irrespective of whether they know someone very well or whether they are a relative stranger. This emotional sensitivity can also feed into a sensitive but outgoing, talkative personality and might also play a role in heightened anxiety levels. This heightened anxiety can have a very big impact on daily living for the person with Williams syndrome and also their family members. Periods of heightened anxiety is often related to specific triggers such as loud noises, sensory issues, or specific phobias. Anxiety is likely to play a crucial role in daily living as many children and adults with Williams syndrome prefer to stick to routines they know, and therefore new or uncertain environments such as tourist attractions, hotels they have never visited before, or restaurants can be especially challenging. 

Raising awareness of some of these aspects of Williams syndrome is crucial for families to engage with the retail, tourism and hospitality industries. For example, a retail outlet or a visitor attraction can be a busy, noisy and challenging environment for someone with Williams syndrome.

  • Children might find noisy hand-dryers in the toilets too noisy and anxiety-provoking,
  • movement issues going down steep stairs can be problematic,
  • the sensory over-stimulation from bright lights or loud noises can be challenging,
  • unexpected events could be a significant anxiety trigger, and these are just a few examples. 

Adults with Williams syndrome can vary in how independent they are but managing money, communicating with sales assistants, and making personal decisions within a retail outlet could be a particular challenge and therefore support and awareness are necessary. 

In this project families of children, young people, and adults who have Williams syndrome will be involved to help understand specific challenges, barriers, and previous experiences; for example previously positive experiences as well as areas needing improvement within these sectors. Of course when there is someone with Williams syndrome in the family who might struggle to engage with tourist, retail or hospitality experiences, there is a multiplier effect throughout the family that needs to be considered; for example what is the impact of these experiences for siblings, parents and grandparents? The overarching aims of this new project are to raise awareness of Williams syndrome and to support families to enhance their opportunities to engage with these social experiences. 

We hope to be able to provide an update on the resources developed as part of this project over the next year. 

For further information on Williams syndrome please visit www.williams-syndrome.org.uk 

For specific information on this project please email Williams.syndrome@durham.ac.uk or visit www.durham.ac.uk/devdis

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