Preparing a person with autism for change
A person with an ASD can find any kind of change difficult. Sometimes, changes that are apparently small and insignificant may cause more difficulties than a significant change, such as the death of a relative. But there are many things you can do to support someone with an ASD through change. This guide talks about situations where change has taken place and the strategies that can be used to help manage the situation.
A person with an ASD thrives on being in a familiar environment with routine and structure. As soon as you know what the change involves, start to prepare them. This may mean that, as parent or carer, you have to be proactive in finding out what is involved in a specific change. For example, if you know your child finds certain changes at school difficult, such as changes to PE lessons, you may need to talk to the school. If possible, find out when exactly changes are going to take place, what is involved and if a different PE kit will be needed.
If someone with an ASD is going to a new service such as a day center or a school, or on a holiday, perhaps flying abroad, it’s important that you prepare and brief staff about the things that the person finds difficult or may become anxious about. Give staff information on how to deal with any specific behaviors or obsessions. If you have used visual supports (see later) before to communicate for example, PECS (Picture Exchange Communication System) boards then it’s also important that these are ready for the person with an ASD to come in and use. Some people with an ASD find it difficult to transfer certain skills into different situations so putting these means of communication in place is important in case they experience any difficulties.
Use visual supports
Visual supports can help to explain what will be happening to someone with an ASD. They help with understanding and reinforce what you are saying. You will need to explain what’s going to happen more than once particularly if the change is going to take place over a long time. It’s important to use clear language and give the person time to process what you say.
Use visual supports to show the person with an ASD the outcome of certain activities. For example, if you are a family with a teenager going on holiday, just showing your son a picture of an airplane may make him reluctant and nervous to go on a plane he may not see the relevance of doing this. If you show him pictures of the whole process, including the destination your family is heading for, this will help him understand the whole situation better (see later, Going on holiday). By reversing the series of pictures to show the return journey, you can talk about the return home.
Also mark on a calendar when the change will be happening and encourage the person with an ASD to count down the days until the change takes place. On the day of the change, a visual timetable can be useful to explain exactly what will be happening.
Many books explain major events and you can use these to help a child or young person’s understanding:
Brown, M. and Krasny Brown, L. Dinosaurs divorce: a guide for changing families. London: Little, Brown Book Group
Lansky, V. It’s not your fault, Koko Bear: a read-together book for parents and young children during divorce. Quality Books Limited
Going on holiday
Auld, M. Going on holiday (My family and me). London: Franklin Watts
Lewis, M. Going on a holiday. Glasgow: Collins Education
Cartwright, S. and Civardi, A. Moving house. London: Usborne Publishing
Hunter, R. Moving house. London: Evans Publishing Group
Civardi, A. Going to school. London: Usbourne Publishing
Alexander, J. Going up!: the no-worries guide to secondary school.
London: A & C Black Publishers
Visit the new place
If someone with an ASD is due to move somewhere new, for example to a new school or house, visit the new place several times beforehand so that they can get used to the unfamiliar environment. Take photos of any key people who are going to be involved. Making a book of photos and information that they can refer to before the change will help to relieve their anxieties.
If you are concerned that the person with an ASD may become particularly anxious about the change, make sure you give them the opportunity to ask questions to help with their concerns about the change. You could provide them with a worry book or box where they can write or draw any concerns they have. Explain the benefits of the change, for example if you are moving to a bigger house or going on holiday.
Set aside a time to work on relaxation techniques to manage anxiety before the change. Create an anxiety plan or use a social story to explain what the person should do if they are anxious. If you can see that the person is becoming anxious before or during the change, remind them to use any relaxation techniques you have worked on. The following books offer information on how to support children who have autism and experience anxiety:
*Dunn Buron, K. (2008). When my worries get too big: a relaxation book for children with autism spectrum disorders. London: National Autistic Society
*Dunn Buron, K. and Curtis, M. (2008). The incredible 5-point scale: assisting children with ASDs in understanding social interactions and controlling their emotional responses. London: National Autistic Society
Some people with an ASD have complex sensory issues and will become anxious because of different smells, noises and lights in different environments. To help them cope with this in a new environment, let them bring reassuring smells, such as relaxing lavender, to the new place. Some people are sensitive to bright lights or noise so sunglasses or earplugs may help them.
During the change
When the change is taking place, keep familiar things close to the person and make sure you communicate clearly with them so you don’t add to any stress or confusion. When giving specific instructions to someone with an ASD, don’t use gestures or specific facial expressions as this will enable them to process what you are saying more effectively. Also give them time to process what you say to them.
Use visual supports and a visual timetable so the person knows what’s happening. Afterwards, if possible, try and keep the persons routine the same as before. Give them lots of praise and support for coping with the change. If the change is because of a move to a new school or care service, try to keep in regular contact with the people working with the person with an ASD to see how they are progressing. If you notice that the service is not dealing with specific behaviors appropriately or using the means of communication that the person with an ASD is familiar with, bring this to the attention of the relevant staff and arrange to have a meeting with them, if necessary.
Finally, remember it can be difficult for people with an ASD to deal with change. It can often take time to adjust so you may notice a few problems to begin with. Hopefully, if you have prepared the person well for the change and have kept things as structured as possible, it won’t take them too long to adapt.
Strategies for managing change
Going on holiday
Joe is 14 and has an ASD. Joe and his family are due to go on holiday in the summer. Joe’s mum explains what will happen to him a month in advance. Together, they make a book about their holiday, explaining what will happen when they go on holiday, including going to the airport, what will happen at the airport and traveling on the airplane, where they are going and what hotel they will be staying in.
Joe’s mum marks on the calendar the dates of the holiday. Joe counts down the days to the holiday by crossing out days on the calendar. Joe’s mum contacts the airline and explains that Joe has an ASD. They suggest that she sends staff information about ASDs. Joe’s mum sends the information and also contacts our Autism Helpline and asks for our information sheets, Guidelines for airline staff concerning flight passengers with an autism spectrum disorder and Holidays: preparation and practicalities. On the day they fly, Joe’s mum uses a visual timetable to explain to him exactly what will be happening and gets Joe to bring a bag of items he likes for the airplane. She gives the airline staff the information sheets she got from us and talks them through any behavioral problems Joe may have and how the family support Joe with these. Joe’s family continues to use a daily visual timetable throughout the holiday.
Divorce in the family
Sue is 11 and has Asperger syndrome. Her parents have decided they are going to divorce. Sue’s dad will be moving out of the family home in the next two months. Sue will stay with her mum in the week and visit her dad every other weekend. Sue’s mum explains what divorce is to Sue. She uses a social story to do this and emphasizes the fact that her parents still love her very much. She explains to her daughter that she will still see her dad at weekends and marks on a calendar when her dad will move out.
Once her dad has decided on a place to live, he takes Sue to visit the house several times. He shows Sue her room for when she stays there and gets her involved in decorating it. He suggests that she brings some of her toys and books to put in her new room. They take pictures of his new house and her room and make a book about her dad’s new home.
When Sue’s dad moves out, Sue’s mum continues to keep her routine as normal as possible and tries to do a few more things with Sue as she sees she has become unsettled. Sue asks frequently, ‘Does daddy still love me?’. Sue’s mum reassures her that he does and continues to use the social story to explain divorce and when she will see her dad. She marks on a calendar when she will see her dad and refers to the book about dads house. On the day of visiting her dad, they use a daily visual timetable to show Sue what will be happening. Sue’s dad continues to use the daily visual timetable and also marks on the calendar when she will be going back to her mums house. He gets Sue to mark off the days to show her when she is going back to her mum’s house.
Moving to a residential service
Zack is 20 and has an ASD. He is due to go to a residential service in the next two months. Zack’s parents have visited the service before and met staff. They talk through Zack’s needs and tell staff of specific behavioral problems Zack has had in the past and how other staff managed these successfully. They show staff Zack’s visual timetable and PECS book that he uses. They ask for this to be put in place for Zack to use as soon as he comes in. They ask about the types of things Zack will be taking part in.
They decide to take Zack to the service several times in the months leading up to him moving to the service. They get him to meet staff at the service and take photos of them and the bedroom he will be sleeping in. Together, Zack and his parents make a book about the residential service and have in it pictures of the staff and his bedroom, and the types of activities they will be doing. They refer to this often and talk to Zack about it in the weeks leading up to the transition. They also mark on a calendar when the change will be happening and get Zack to mark off the days till the change. They talk Zack through what to do if he feels anxious during the change and explain they will come to see him at the weekends. They make sure that Zack can take familiar items with him to the service.