Understanding PDA and sensory needs

This page is about sensory processing differences some PDAers may have and what can help make living with those differences easier.

When someone close to us dies, it can affect every part of life. For PDAers, experiences of grief and loss can feel especially complex and challenging.

This page suggests some ideas for considering when navigating a bereavement in your life. We have put together this resource with input from adult PDAers and those with lived experience.

When someone you know dies, it can be a stressful and confusing time, especially if you are faced with the demands of planning a funeral and making decisions following a death.

These include (but are not limited to):

Knowing what to say – there may be public outpourings of grief and you might feel unable to comfort others or find the right words to say.

Sending a card – the expectation of sending a sympathy card can  be tricky with the demands of going to a shop, choosing the “right” card and deciding what message to write.

Holding in feelings – when PDAers are asked to make decisions about what to them is a small and meaningless detail, it can cause a resistance to show emotion. 

Attending a funeral – these events carry many demands, such as finding your way to an unknown venue, wearing specific clothing and having rituals everyone is expected to follow. The rigidity of these demands can cause anxiety.

Strict timings – Arrangements around death and funerals often have strict timings which cannot be altered or may involve some waiting time. The lack of flexibility can prove difficult as you may feel out of control.

Social anxiety – there might be some unfamiliar faces and people who want to interact at a funeral or wake. You may feel obligated to take part and struggle with having to communicate with people on their terms.

Everyone experiences grief in their own way and you might not express emotions in the way others might expect.  It’s okay to experience a range of feelings in different ways and at different times.

You might:

• Struggle to identify and name feelings.
• Avoid talking about the loss altogether.
• Need autonomy and familiarity within your environment, such as sticking to your chosen routines.
• Seek comfort through objects or creative outlets such as art or music.
• Absorb yourself in your special interest or work.
• Experience interoceptive changes which may affect things such as your sleep pattern and appetite.
• Become more easily overwhelmed by everyday tasks and avoid them more than usual.

Grief can heighten sensory sensitivities, and you may choose to do some things differently for a while to self-regulate and manage your emotions.

You could try:

Getting involved – if it helps you, making some decisions about the funeral or wake such as the colour of flowers, choosinga hymn or poem, what food to offer or a photo to share, or any task which doesn’t feel too overwhelming.

Planning quiet time – Identifying some time out or time alone to help you feel less overwhelmed. This might be on the day of a funeral or at other times during the process.

Having an exit plan – making a plan and sharing it with a safe person to help you to be able to attend the funeral or wake if you wish to do so, even if for a short time.

Visiting the venue – if possible, visiting the venue of the funeral and/or wake in advance could help you to feel more at ease on the day by giving you a sense of familiarity.

Accommodating sensory needs – if it helps you, use a sensory comfort item to support regulation as often as you need to.

Expressing emotions – understanding that whatever you feel is okay can be a step towards being able to share your feelings. It might help to find something you enjoy doing such as a creative activity which could enable you to express yourself in a non-verbal way.

Remembering someone – this can bring comfort and connection when you are grieving for a loss. Creating a memory box with photos, drawings and letters,  planting something ,or watching a video to see and hear them can help you to keep their memory alive.

There are many ways to help manage sensory differences. Over time, by trying things out you could find a few approaches which work for you or the PDAer in your life.

Having a bag ready at the door with items that could help (for example sunglasses, ear plugs, a fan or something that smells familiar) can really help too.