Death can be very difficult for people with autism to understand. This is for a number of reasons

• Death means change – change is very difficult for people with autism to understand and cope with.

• Death means someone that was around is no longer in their life and they do not understand why.

• Death makes the people around them act in different ways.

• It is hard for people with autism to understand things they cannot see – i.e. where a person goes when they die. A concept such as “heaven” or the “afterlife” or terminology such as “passing away” may be very difficult for a person with autism to conceptualise.

Coping with the reaction of a person with autism can be hard for other family members.
• Children with autism don’t understand other people may be feeling upset and can ask questions or make statements that seem blunt, uncaring or rude. The child or person with autism is not being intentionally rude they just do not understand the social sensitivities of dealing with grief.

• After a death the behaviour of the person or child may change, due to changes in routine or lifestyle as a result of the death. – Being upset because grandma does not take the child to the park anymore, not because grandma has died.

• The person’s behaviour may change in reaction to the behaviour of those around them. – Becoming upset or anxious because they see their family members upset.

• Children with autism may want to ask lots and lots of questions about death or dying in great detail and learn all about it or become obsessed by it in an attempt to understand it.

• Some children with autism may retreat into their own world, self stimulation or engage in other comforting ritualistic behaviours.

Funeral attendance
The issue of funeral attendance and the involvement in the religious practices of the family is one that needs to be worked through on a personal level by each family. Whenever appropriate the person with autism needs the chance to go be a part of religious practice or ceremony, go to the funeral and visit the person’s grave. This may help provide some permanence and finality for the person with autism.
A respite carer could be utilised to support the person with autism at this time if family members are too distressed.

What you can do
• Prepare for death (in the case of a long term illness) by talking about it and making a memory book for that person. Discuss why the person is at the hospital and what is happening to them.

• Use simple language and be factual – remember that people with autism may take things very literally –
Saying “it’s like going to sleep “ will not be helpful and can cause further anxiety. Sometimes it helps to talk about death as part of the life cycle, using bugs or other animals as an example.

• Be prepared that the child or person with autism may not have a typical grief response, may not appear emotional and may ask awkward or obsessive questions at an inappropriate time.

• The child or person with autism may want to engage in self-stimulation, obsessive behaviour or engage in other behaviour as a reaction to the death.

• Keep the same routine if possible. Disruption to routine will make any behavioural responses worse and cause further anxiety.

• Use visual supports or stories to help explain what has happened.
A social story about death can be found at
http://www.polyxo.com/socialstories/ss0014.html

Seek counselling support if needed –
In the Barwon region
Paediatric Adolescent Support Service (PASS) Program

Contact Hours: 9am to 5pm Monday to Friday
Address: 15 Pakington Street, Geelong West VIC 3218
Telephone: 5226 7075
Email : passprogram@barwonhealth.org.au

Wombats Wish – Counselling and support for bereaved children.
http://wombatswish.org.au/

Contact your local autism service provider for further information .
Further info –

http://www.autism.org.uk/en-gb/living-with-autism/at-home/death-bereavement-and-autism-spectrum-disorders.aspx