Major Life Changes
Please note: This section refers to death, dying and bereavement.
Bereavement and Autism
The experience of death within a family or circle of friends is always difficult and challenging. The death may be due to COVID-19 or it may be completely unrelated. The parent or professional’s instinct may be to protect the child or young person from the experience. The parent or professional may worry how someone with autism will understand and interpret the situation and come to terms with the loss.
It is important that the parent or professional gives honest and appropriate information about death as this will help the child or young person cope better in the longer term. The information shared will depend on the child or young person’s level of understanding and age. It is also important to consider how this information is going to be presented as it may differ to what a child or young person with typical development will need.
Bereavement – Stages of Understanding
The bereaved child may display aspects of one or more of the following stages. However, the parent or educator should remember that children and young people with autism often have fluctuating developmental profiles and may not fit neatly into one stage.
- If the person who died was a significant carer such as a parent, the child or young person will miss the touch, smell, sound of the person, but not understand they have gone forever.
- The child or young person will not have a cognitive understanding of death but will experience and be aware of the separation.
- The death of a person who was not an immediate caregiver is likely to be experienced as a change to the child or young person’s environment.
- The child or young person may pick up on the emotions of others grieving and notice changes to their routines.
- They may feel strong emotions but be unaware of what these are or what is causing them.
- The child or young person is aware of the person who died is missing, but not fully understand why. They will not understand the finality of death and that the person who died is not coming back.
- If they associate a place with the person who died, they may go to that place and expect to see them there.
- They will react to other people’s emotional states but not understand.
- They continue with the ‘here and now’ and be easily distracted with an activity or item of interest.
- The child or young person will miss the person who died and show understanding that they are no longer here, but not yet understand what ‘dead’ means.
- They have some understanding of the physical reasons behind a death, that the body no longer functions.
- They have some grasp over the more concrete elements of death such as the burial.
- They understand and recognise some of their own feelings, such as crying / sad/ lonely, but not relate it to their grief.
- The child or young person is beginning to understand that death is permanent.
- They understand that death is something that happens to all living things but will be curious, confused and possibly scared about it.
- They show some understanding of the abstract elements of death, for example, if the family have spiritual beliefs in the afterlife.
- They have awareness and insight on the impact of the death on others and how others are feeling.
- At this stage, the child or young person will have an understanding of the finality of death and the long-term consequence of death, such as the person not being present for future milestones and the loss of the relationship they had with the person who died.
If Possible, Prepare for a Death
The nature of COVID-19 related deaths and unexpected death such as an accident means that death happened unexpectedly with no time to prepare the child or young person with autism for what happened.
However if a person is ill and not expected to live, preparing the child or young person with autism for what is going to happen is recommended. This may be very painful and difficult for the parent or professional as they may be trying to process and come to terms with events as well. Anticipated changes to routine and daily care will be less difficult and challenging for the autistic child or young person if time can be spent explaining and visually outlining what may or is likely to happen in advance. The use of a calendar may give a visual perspective on time.
Explaining the Death of Someone Special to a Child or Young Person With Autism
When explaining the death of someone special to a child or young person with autism it is important to carefully consider the language and explanations and how these may be interpreted by the child or young person with autism. Using direct language is important such as ‘Granny is dead’ rather than ‘Granny has gone to a better place’. Phrases often used such as, ‘lost’ or ‘gone to sleep’ may be taken literally and cause confusion and anxiety for a child or young person with autism. The child or young person may be afraid to go to sleep themselves if they are given this explanation.
For some children, a social story or narrative may be effective for outlining the facts. The parent or educator can read the pictorial or text-based explanation with the child or young person, then give time for the information to be processed. A social narrative using pictures or photographs of the special person who has died may be effective.
It may also be necessary to be explicit about the fact that the special person will not come back, that they no-longer breath, eat or sleep. Some children and young people with autism relate well to the explanation of the life cycle as it can be demonstrated pictorially. A biological approach can be practical, clear and visual, for example, comparing a dead or wilting flower to a fresh flower or a dead bug with a live bug.
Funeral Service and Gatherings to Remember the Person
Pre COVID-19 a family may have organised a spiritual or religious service where they met socially with friends of the person who died. They would have shared stories and memories about the person who died paying tribute to them as they said goodbye to them. However due to the coronavirus pandemic, government guidance regarding social gatherings to remember a person who died is currently in place. This guidance may mean that families defer the social gathering, memorial service or funeral service until further social restrictions are lifted or it may mean that the service or funeral goes ahead but with a very small number of immediate family and very close friends attending and complying with social distancing guidance.
For a child or young person with autism, the abstract aspect of death may become more real or concrete if they have an opportunity to say goodbye through attending the wake, service or funeral. However, as each family’s circumstances are unique, it is the parent’s personal choice whether or not, the child or young person with autism is allowed or encouraged to attend the service or funeral. Attending can help the child or young person with autism understand the finality of death and also help them feel more involved and less isolated as they share this experience with others who also had a relationship with the person who died.
If attending, it is recommended to prepare the child or young person for the event. Outlining what will happen and if possible take them to visit the place of worship, burial site or crematorium beforehand. This will help prepare the child or young person for the routine when they attend. Watching a short video clip of a funeral service, similar to what will occur for the dead person, may help the child or young person understand what will happen and what to expect.
If the child or young person is attending, it is important to remember that they are likely to have sensory differences or a co-occurring need which may mean attending the full service is difficult or not possible. It may be an option to have the child or young person present for part of the service while having access to a quiet area nearby.
When preparing your child or young person for the service or funeral, you will need to consider the child or young persons level of ability and how they process information and understand proceeding. The parent may need to consider what type of visual supports, for example, photos of the location, a text based list or a social narrative, will be most effective in helping the young person understand what is likely to happen and what they will be expected to do. It may be important to explain to the child or young person that some people or mourners, may be upset and crying so they are prepared should they see this and that social distancing must be adhered to.
Click here to view a video of a Funeral Service
Click here for visual called Visual Schedule (Symbol) Home, Church, Burial, Home
Click here for visual called Visual Schedule (Symbol) Home, Church, Crematorium, Home
During this exceptional time of COVID-19 restrictions, it may not be possible to take part in normal end-of-life and funeral practices. Infection controls may mean family members do not have an opportunity to spend time with someone who is dying, to say goodbye in the usual way or attend a wake or funeral. Your child may be able to say goodbye through writing a story or poem for the special person who has died or by collating items that remind them of the special person such as photographs, and displaying them in your home. It may be possible for the child or young person to watch the service or funeral via live webcam from the security of their own home.
Provide Reassurance – Support to Rationalise
A change in routine due to a death within a family or family circle may cause an increase in anxiety for the child or young person with autism meaning they need help to rationalise what has happened and reassurance so they feel less worried.
Some children and young people with autism may need an explanation about the cause of death and help to rationalise that they are unlikely to die soon and that other people important to them are unlikely to die soon. Explaining to the child or young person that whilst some people do die when they are young; they may have an accident or have an illness, but this is not common. For some, a visual representation of the facts may be helpful.
Using a mind map, including statistics, is an example of an effective strategy. Here is an example of a mind map to help explain and rationalise a death from COVID-19.
The parent or professional can provide reassurance by explaining that most people live a long life and die when they are older. Again, it may be helpful to represent this visually in a personalised family tree.
Change in Routine
For some children and young people with autism the change to their routine due to a family bereavement may be what they experience difficulty with initially. Therefore, continuing with the established routine, as far as possible, may provide comfort and facilitate the opportunity for the child or young person to process and respond to the sad news. When there is a change in routine or a change to the person supporting an established routine, it is important to clearly communicate the change to the autistic child or young person. Here are some examples of how a change can be communicated on the person’s visual daily schedule. Click here to view a video on Teaching Change
The child or young person with autism may experience all the emotions associated with bereavement and grief that a typically developing child or young person experiences. However, the child or young person with autism may have difficulty interpreting and understanding their emotions and feel overwhelmed with their intensity. This is very difficult during an already upsetting time as it can result in behaviours that challenge.
The child or young person may engage in repetitive behaviours or increase their pre-existing self-stimulatory behaviours such as pacing or stimming. This is likely to have a calming influence on them and should be facilitated if it is not impacting on safety.
The child or young person will respond to how everyone around them reacts during a time of grief. It is normal to cry and be upset. It is also normal to be quiet and sad, or to try to distract and keep busy. Everyone reacts differently to grief and will experience different emotions through different stages of grief. When the educator or parent models healthy grief emotions, it helps the child or young person understand what they can do too. Children and young people with autism may benefit from further visual representation and naming of emotions.
Helping the child or young person with autism to be aware of their emotions and discover things that make them feel better may help. Ideally, the child or young person with autism should regularly practice these strategies which will allow a parent or a professional to be aware of what is most effective for them.
Other strategies effective for promoting daily emotional well-being include:
- Encourage and facilitate physical exercise every day.
- Facilitate a calm and quiet time where the autistic child or young person can listen to music
- Exploring and engaging in creative mediums such as art or music.
- The autistic child or young person may seek solitude and greater comfort in being alone rather than with others. It is important to incorporate time to be alone and have this time on their schedule so that they can see when it will happen.
- Encourage a good sleep routine. A regular bedtime with a comforting and or relaxing activity beforehand.
Further information on teaching Emotional Regulation click here.
Grief First Aid Jar:
This is a simple strategy that the child or young person with autism can be involved in creating and customising to suit their unique needs. The following items are required to create a Grief First Aid Jar:
- A glass or plastic jar
- Squares of coloured paper
- Write things they like to do or would like to try on each square.
The child, young person or supportive adult writes things they like to do or would like to try on each square. These are things the child or young person can do or try when feeling sad. Activities based on their special interests might help. Other things that might help include:
- Watching a movie
- Eating a favourite snack
- Reading a favourite book
- Have a hug
- Listening to favourite music
- Going for a walk
Engaging in these activities brings reassurance and comfort to the child or young person.
Be Aware of Changing Behaviours
As time passes the child or young person with autism may have difficulty verbally expressing their grief, it is important to observe for signs that they may be feeling overwhelmed and struggling to cope. Signs may include difficulty sleeping, change in eating patterns, increased agitation or irritability and increase in repetitive behaviours.
It is important to communicate any concerns openly between home and school. The child or young person may require specialised support. The child or young person’s G.P or one of the professionals involved in the child or young person’s care and education will be able to direct parents to support.
Supporting the Bereaved Child or Young Person in School
School may be the only constant stable feature of the autistic students’ life during a bereavement and the grief process. Routine is often very important for the autistic student, therefore adhering to routines, as much as possible, in school is a very important part of the healing process for everyone. Adhering to the established routines bring an element of normality to each day.
Other ways to support the bereaved child or young person in school:
- Acknowledge what has happened and discuss how to share the news with peers.
- Incorporate time for emotional regulation. Identify a special place the child or young person can go to in school to engage in strategies to support emotional regulation, such as deep breathing or listening to calming music.
- Liaise with parent or parents about the language used to describe what happened so it is consistent with the home.
- Teach about death and dying through books and classroom materials.
- Teach about the biological understanding of death as it occurs, for example, life cycles, dead bugs and animals. Click here for visual called All Living Things…)
- The Zones of Regulation programme may be useful to teach emotions and identify tools to help with emotional regulation.
- Supporting the bereaved child or young person with autism may be difficult during the coronavirus pandemic due to restricted contact however other forms of contact can be utilised such as video link or telephone call.
Unusual Interest in Death
Some children and young people with autism may become very interested in death following a bereavement. They may want to speak about it a lot and may not understand when it is not appropriate to do so, or that they may be upsetting others. This may be their way of processing thoughts or images that they are struggling to or do not understand. Allocating time across the day to allow the child or young person to communicate freely or to research the topic of death may be helpful. Creating a listing or showing photographs of the people the child or young person can communicate with about death may also be beneficial.
Activities to Remember the Person Who Died
Below are some ideas which are commonly used to comfort the bereaved. There are aspects of these ideas which will particularly appeal to a child or young person with autism.
A memory box: A memory box may be a helpful way for the concrete thinker (i.e. focused on facts in the here and now, physical objects, and literal definitions), to remember their loved one who died. The child or young person can decorate the box with photos they have chosen of the person who has died. They can fill the box with items that are significant to what they enjoyed doing with the person who died or personal items belonging to the person who died, for example, a DVD they watched together or their favourite cup.
Artwork: Creating a piece of art to remember the person who died can include drawing a picture or making something which could be preserved or framed. Expressing emotions and experiences through creativity is often a preferred medium for autistic people.
Planting a tree: Children or young people with autism who have a greater understanding of the finality of death and concept of circle of life may find comfort in planting something that will grow to remember the person who died.
Creating Memory Book or journal: The child or young person may enjoy creating a memory book or journal focused on the person who died. The child or young person would write down a timeline of happy memories, hobbies they enjoyed with the person who died, things they would have liked to tell the person and photographs of them and the person who died. The parent or educator could provide the child or young person with sentence openers such as:
- The thing I miss the most is …
- I hope that …
- Thank you for…
- I wanted to tell you that …
- I would have liked to …
Parent or Professional Taking Care of Self
It is very important that the parent or professional takes care of self and receives support during times of grief. When the parent or educator has a support system in place, this increases their capacity to help the child or young person cope with their grief. The support may be from other family members or friends or it may be from a professional. It is important to try to stay connected with friends and family every day. Make time to call or video call to talk about how you are coping and feeling.
Order helps to calm. Try to keep routines, as much as possible: getting up and dressed at the usual breakfast time, a relax or wind down time at bedtime and main mealtimes adhered to.
Resources You May Find Useful
Books to use with children and young people:
- Books beyond words: a series of books without text
- Where Are You? A Child’s Book About Loss by Laura Olivieri
- Sad Isn’t Bad: A Good Grief guidebook for Kids Dealing with Loss by Michaelene Mundy and R.W. Alley
- When Your Grandparent Dies: A Child’s Guide To Good Grief by Victoria Ryan and R.W. Alley
- Nana Upstairs and Nana downstairs by Tomie de Paola
- I miss you: A first look at death by Pat Thomas
Faherty, C. 2008. Understanding death and illness and what they teach us about life an interactive guide for individuals with autism or Asperger’s and their loved ones. 1st ed. Airlington US: New horizons.
Broadhurst, S. and Forreste-Jones, R. 2007. Autism and loss. 1st ed. London: Jessica Kingsley Publishers.
Online resources and supports:
Separation and divorce are life-changing situations for everyone in a family. The change in routine and perhaps movement between two households can be challenging for most children but particularly so for the autistic child or young person. Consequently, because of the diagnosis of autism, the child or young person may not react in the way that would be expected. As they take time to process the changes, it may appear as if the separation or divorce has not impacted or alternatively, the challenges may be communicated through changes in behaviour. As every child is different, the type of support the child with autism requires will depend on their needs.
Children with autism often prefer predictable routines and structure, and this can be difficult to ensure during times of significant change in a family. It is therefore important that autistic children are supported as they respond to the inevitable disruption to their lives.
During separation and divorce, it is typical for children to have concerns about where they will live and when they will see each parent. This can cause significant stress and anxiety, therefore communication and structure are crucial during these periods of change for children and young people with autism. It is important to have clear arrangements in place because at times, when there is no clear or regular pattern, the stress and anxiety can cause a reluctance by the child with autism to comply and see the non-resident parent. To help the autistic child or young person manage during this period of change, parents may want to consider the following points:
Breaking the News to Your Son or Daughter With Autism
Parents who have lived this experience, share that there is never a ‘right time’ to tell children that parents are separating or getting a divorce, but that once parents have agreed on post-separation arrangements, such as living and visitation arrangements, it is important to talk to the child or young person without delay.
Parents may find it useful to prepare in advance what they are going to say. It is a stressful time for parents, therefore writing down and pre-empting responses to difficult questions may help parents be better prepared for responding to the child’s needs. How a parent communicates, including actions, is important as this can provide reassurance to the child about the change but that a parent’s steadfast love and care for them will remain the same. Avoid blaming one another and try to communicate the separation or divorce in terms of a shared decision. Remaining calm will help reassure the autistic child or young person that they will be OK.
Development Stage Appropriate Discussion
When informing your child about the separation or divorce, it is important to consider the autistic child or young person’s level of development in terms of language and cognitive understanding. Depending on the these, parents will be able to determine whether the child needs a simple explanation such as parents will be living in different houses, or a more detailed explanation with precise information. It may aid understanding to use visuals such as photographs to show the autistic child or young person each house as you communicate that parents will be living separately.
Communicating Details of Change
Each autistic child’s level of understanding and need will differ but common concerns include, what is going to happen to them in terms of living arrangements, pets, school, etc… Visual support strategies can be effective for communicating this information as too much verbal or spoken information can overwhelm the autistic child or young person. Click here to view information on using visual support strategies
Each child’s reaction will be unique therefore the autistic child or young person may not respond or they may do so in an unusual way, for example, laughing. Allowing the child or young person time to process the information is very important as they are likely to have a delayed reaction to the information you are sharing with them. As they process the information you may see a change in behaviour such as sensory-seeking, withdrawal, and self-stimulatory behaviours. As long as these behaviours are not harmful to the child or young person, they should not be discouraged without having established an alternative strategy as it is likely they are serving a purposeful function for the autistic child or young person.
It is important to bear in mind that children and young people with autism may seem to ‘get it’ one day but be unsure the next, so be patient and allow the autistic child time to process the information. Also, the concept of separation or divorce may be abstract (i.e. just a thought or an idea that is not concrete) to the autistic child or young person and can remain abstract until one parent physically moves out of the family home.
Acknowledge Your Child’s Feelings
What-ever way the child or young person reacts, it is important to acknowledge their feelings. It is normal for children and young people with autism to have difficulty expressing their feelings so you may need to help them find the words for the emotions they are feeling. Help your child to notice their mood and encourage them to communicate how they are feeling. The Incredible 5-Point Scale is an effective tool for helping children and young people with autism express how they are feeling.
It is natural for children to feel anxious when faced with a big life change such as parents separating, so be prepared for them to express feelings through behaviour such as anger and or resentment towards one or both parents. Also, some children and young people with autism may be reluctant to share their feelings in case they hurt a parent. What they need is to feel is reassured and to know that whatever they feel and say is OK.
Reduce the Number of Unknowns to Manage Anxiety
Reducing the number of unknowns will help to lower the child or young persons anxiety. Acknowledge that some things will be different while other things will not change. Parents should use visuals such as photographs or calendars, to support and augment as this will help the child or young person with autism process and understand what they have been told which they can refer back to when you are not present. The visual supports do not need to be elaborate but can be as simple as a stick drawing on a white board.
Often children and young people with autism are literal or concrete thinkers and may think that separation and divorce can happen between any two family members. Therefore, parents and professionals may need to explain that a parent does not divorce a child. The child or young person with autism may need frequent reassurance that parental love for them remains the same even though living arrangements of family members change. They may need reassurance that they can continue to have a loving relationship with both parents.
Inform Professionals Involved with Your Child of the Separation
It may be helpful to make a list of all professionals who support your child (e.g. school staff, Speech & Language Therapist, Occupational Therapist, Doctor etc.) to inform them of this change in personal circumstances. They may see changes in your child’s behaviour and they will be in a better position to support them if they are aware of parents separation or divorce.
To help ease the transition into a new arrangement, it will be important to put support strategies in place for the child or young person. The following suggestions will need to be adapted to suit the unique circumstances as well as developmental and cognitive level of each child or young person diagnosed with autism.
Visual Support Strategies
Predictability and routine are key for children and young people diagnosed with autism, especially during times of uncertainty and change. An autistic child or young person may also experience difficulty processing information communicated verbally, especially when anxiety levels are elevated. For some autistic children and young people this may increase their need to use visual support strategies.
Using a visual schedule that the child or young person can understand is a fundamental requirement Click to view Types of Schedules
Visual supports can also be used to indicate when the child or young person will spend time at each parent’s house, who will collect them from school on the days they attend school etc. It can be reassuring for the child or young person to see and know that no matter whose home they are in, the routines they enjoy will be followed, for example, dinner followed by relax time, a bath, time in bedroom with parent, then sleep. Therefore, it would be helpful if both parents used the same or similar visuals in each house with both parents adhering to the routines communicated on the schedule.
A First/Then or First/Then/Next board is an example of a visual schedule. It communicates to the child or young person what they will be doing now (first) and what they will do next (then). A First / Then schedule can be used with objects, photographs, symbols or words, and can be as a simple as a line drawing on a piece of paper or whiteboard.
There will be periods of time when there will be changes to the usual day-to-day routine, for example school holidays. A visual calendar can be used to explain to the child or young person with autism whose house they will be staying in over the holiday period or over the course of a month and to communicate what activities you might do together. Click here to view Calendar Activities I Might Do
Where possible, inform the child or young person in advance of planned changes. A visual system for change should be used in conjunction with the visual schedule to augment a verbal explanation of the change.
A social narrative also referred to as a social story, is a method of communication between a parent or professional and the child or young person diagnosed with autism. It can be used to prepare a child or young person for a range of scenarios. The narrative can be adapted to accommodate the age and developmental level of the child or young person and can include pictures and images.
The Incredible 5-Point Scale
The Incredible 5-Point Scale can be used to teach emotions and the different levels of intensity of an emotion.
At each level on the scale, a number or colour represents the level of emotion felt. The child or young person can be supported to recognise and identify what level they are at and strategies they can use to regulate self.
Creating A Calm Area
Processing significant change such as parent separation can be overwhelming and anxiety-provoking. Many children and young people with autism benefit from having a quiet place or calm area where they can retreat to and to engage in activities they enjoy such as reading, colouring-in or listening to music.
A small space or specific quiet area of the home, a pop-up tent, a pod chair, or an outdoor playhouse/shed could be used. Ideally, both parents should try to replicate this ‘special’ place in each home.
Further information access webinar on Sensory Processing presented by Jill McCanney
Travelling to School
When parents are discussing visitation or living arrangement plans as part of the separation, it would be important to consider arrangements for the child or young person’s travelling to and from school. Click here to link to Returning to School
For adolescent girls, it will be important to be aware of the monthly cycle as menstruation can be a stress evoking time for the young woman. To reduce any anxiety and to ensure the young woman is prepared ensure there is a designated area which the young woman has easy access to in both houses where sanitary products and the associated visual supports are stored.
Both parents should avoid using the child or young person as a messenger to relay information between each other. This can put the child or young person under unnecessary pressure and can cause anxiety and upset if they forget to pass on information.
Anxiety Due to Child or Young Person Temporarily Separating From A Parent
Autistic children and young people who spend time in two separate households with parents, can experience anxiety when separating temporarily from a parent. Therefore, it is important to establish a routine so as to provide a sense of predictability and structure for the autistic child or young person.
A visual calendar can be used to indicate which nights the child or young person will spend at each parent’s house and visuals can be used to clarify when a parent will be returning to collect them. It would also be important to ensure that any special items are sent with the child each time they go to the other parent’s house.
Click here to link to the section on strategies to support a child or young person experiencing anxiety about separating from parent post lockdown in Managing COVID-19 Specific Fears.
Careful consideration will need to be given to plans for special occasions including Christmas, birthdays, and holidays/trips away. The child or young person with autism will need to be informed in advance of what will happen and who they will be with in order to alleviate anxiety. This can be explained using the visuals referred to in this resource.
It will be important to inform the child or young person with autism in advance of special occasions in school such as Sports Day, special assemblies or concerts and school plays so they know who will be attending in order to avoid disappointment or confusion at the special occasion.
Parent Planning to Introduce Child or Young Person With Autism to a New Partner
This can be a sensitive anxiety evoking situation for all children, therefore it would be important for the parent to use their own sense of judgement to determine when the time is right to introduce a new partner to the child or young person with autism. This is also a change and as such the same principles of preparation and the use of visual support strategies should be followed.
Read next: Managing COVID-19 Specific Fears →