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Can Social Stories really help autistic young people?

Teaching assistant sharing a story with a boy pupil in a green jumper.

By Lynn McCann author of Stories that Explain

*Social Stories are a Trademark of Carol Gray https://carolgraysocialstories.com

 

As an autism specialist teacher, I have been writing social stories for over 15 years. But I’m the first to admit that social stories can be ineffective, damaging and even dangerous.

The trouble is that many people have heard about Social Stories and mistakenly think they are a tool to sort out misbehaviour, or to get a child to comply with something. These sort of Social Stories are ineffective because they are badly written with no reference to the actual structure and rules created by Carol Gray in the early 1990s for very good reasons.  At best you might have wasted your time and the child and the staff end up feeling that Social Stories are not worth using a tool. Sadly, badly written social stories can also seriously damage a child’s self-esteem or put them in danger.  The relationship with the adults around them can be damaged through them insisting that the child complies with something that is actually very difficult for them to do. The adults’ wrong assumptions can affect the child’s mental health and make them very vulnerable to exploitation. This is a serious matter.

I would always be fair to parents and teaching staff as they are often told by educational psychologists, advisors, autism trainers that they should use Social Stories without being given any training in how to write or even choose a good one from the millions of templates there are out on the internet. Wanting to help, people might search the internet and copy something that they’ve seen online and hope that it will help the child.  Often, what they end up with is a script that breaks all the rules of how to write a good Social Story.

 

These are some of the things that make a script not a Social Story

  • Only talking about negative things;
  • Using language such as must, always, you need to, you will, you must, you have to
  • Assuming how someone will feel;
  • A list of rules or punishments;
  • What you must do to please somewhere else;
  • Explaining how your actions hurt other people and blaming the person for getting it wrong;
  • Insisting that the person understands your point of view;
  • Insisting an autistic person behave in a typical way or trying to make them stop being themselves.

 

A Social Story works really well if first we understand the experience or the issue from the autistic person’s  perspective. Then we write the story in a way that acknowledges this. We use carefully chosen words to explain what we would like to help the person understand in a way that makes sense to them.  Carol Gray’s rules on sentence types allow us to do this. Following her guidance means that we can write good Social Stories consistently and be more certain that there are helpful resource, and not a waste of time.

I have written Social Stories to help autistic children and young people understand many different social situations that they found tricky or confusing. I’ve written stories that help autistic children manage many different anxieties and prepare for new experiences. The topics I have written them about, range from “what happens to poo when it goes down the toilet”, to “why we can use other people’s ideas in our writing and how that helps us know what to write”. I have written about death, loss and fears as well as celebrations, affirmations and how awesomely autistic someone is. You can write Social Stories for very young children, for those who do not use verbal language or cannot read, right through to those who can discuss and consume very complex explanations when they are written in a way that makes sense to them.  I personally write most of my Social Stories with teenagers who are trying to understand the complex world around them.  We have covered politics, gender, revision, relationships, sometimes with a huge dose of humour as we seek to reassure and celebrate the young person’s life and help them navigate through school and beyond.  Their views and aspirations are celebrated and often by this age, we write the account together so it is for them and with them.

In my book, Stories that Explain

https://www.ldalearning.com/product/communication-and-interaction/autistic-spectrum-condition/teaching-resources/stories-that-explain/admt14158

I shared over 60 social story templates for primary age children, that could be edited to support common situations that we have found our autistic young people have had to deal with over the years.  Each one takes account of the sensory and communication differences as well as explaining the situation to help them understand it better. We write coaching sentences which helps a child make choices about what they can do in each of those situations.

I’m really passionate about teaching other people how to write good Social Stories… and we regularly put courses on to teach people to do just that.  Keep an eye on our UPCOMING TRAINING PAGE for dates, or invite me to do training for your school, group or organisation.   The course is open to everyone, at a reasonable cost and in the three hours I’ll take you through the rules, show you examples and then you’ll have a go at writing a story with my tutelage.  I intend to give you all the skills you need to be able to go away and write your own social stories for the children, young people and even adults that you support.

This course is suitable for parents, school staff, and volunteers and carers. We can do it online or in person, so that people from anywhere can join us, and you will also receive a pack of story examples, the handout from the training and some helpful tip sheets so that you can continue to write the best Social Stories.

(Social Stories can be written for children, young people and adults so whichever service or age of person you work with, this course is for you).

Supporting autistic children through bereavement.

A young girl in a red dress sitting on the right of a long bench with a teddy at the opposite side of the bench.

Written by Kirsten Illingworth Specialist TA with Reachout ASC.

“Autistic children  may react to a bereavement in different ways to neurotypical children. Some of the underlying perceptual and processing difficulties observed in autistic children may affect their understanding of death and their reaction to a bereavement. Autistic children, like any others, need their grief both recognised and understood and will need opportunities to express how they feel” (Katie Koehler DClinPsych 2016).

It is difficult to explain death and bereavement to a child and more so to an autistic child. During the recent Covid-19 epidemic many families have lost a loved one. For families with an autistic child, this is made harder as they struggle to express how they feel or understand their emotions. As well as suffering the loss of the person that has died, autistic children can be further distressed by all the changes that might happen in their day-to-day lives as a result of the bereavement.
In this blog, I will try to give you tips to help you support your autistic child to understand what is happening.

Prepare

Involve your child and try to prepare them. If someone is dying due to illness explain what is happening, keep them informed of any changes. If it is a sudden death this is not possible, but they will pick up and be aware of any changes within the household such as the atmosphere or routines. Talking and explaining about what has/is happening and also reassuring the child that it will not happen to them may relieve some anxiety and stress for that child. You can do this matter-of-factly and simply. Try not to expect that they will feel the same emotions as you. Keeping your own emotions calm as you talk to them can be difficult but having something to read or look at (such as symbols and pictures) can give you both something tangible to focus on.

Behaviour

Autistic children may not respond to the death of someone close to them in the same way as other children, but this does not mean they are not grieving. Processing the emotion and facts of the death can take much more time than you might expect. Don’t go on their immediate response to judge how well they are processing it. Changes in behaviour, increased anxiety, confusion, refusal to do things they normally do as well as talking about death are some of the warning signs that you must watch out for as this could mean your child needs more help and support as they are not coping as well as you thought.

Feelings

Autistic children can find recognising/expressing feelings difficult. To help your child to express/recognise their feelings you can look at different emotions in stories, pictures or, in the people around them so they can try and understand how they feel. We have some emotional literacy ideas on our blog about autism and anxiety.

Talking

When explaining ‘Death’ to an autistic child they may need help with understanding the idea of death as well as opportunities to express their grief.  You can use simple, concrete language and try to avoid using euphemisms such as ‘lost’, ‘passed away’ or ‘gone to sleep’. You may need to explain what dead means in concrete terms – ‘When someone is dead their body is no longer working and their heart has stopped. A dead body cannot move or feel anything, so there is no pain.’

Memory Box

A good way to help your child could be to talk about the person who has died. You could maybe create a memory box of things that belonged to the person who has died or that reminds the child of the person that has died. By making it together with a trusted adult may allow them to open up about their feelings and worries.

Social stories

Social stories are a great way to explain things to autistic children. They can be tailored to your child’s needs and help explain feelings and emotions as well as events, such as funerals and what has happened.  Lynn has created three social stories related to this topic in her book “Stories that Explain” but whatever you do in writing a social story keep it factual, positive and remember you are explaining the concept to them, not how they must feel or react. Give them choices about what they can do and explain the ways other people might feel or react without putting pressure on them to respond in a particular way.

Finally, we must let your autistic child know that it is ‘OK’ to have these feelings of loss and grief, be upset or angry, or even cry or not cry. Everybody is an individual and will deal with death differently. Attached are some resources that can help you and your child.

References
Katie Koehler DClinPsych (2016) Supporting children and young people with Autism Spectrum Disorder through bereavement, Bereavement Care, 35:3, 94-101, DOI: 10.1080/02682621.2016.1254437

Autism Bereavement Resources

(we do not endorse any particular resources, these are here for you to search and find the resources that work for your child).

https://www.autism.org.uk/about/family-life/bereavement.aspx http://www.thinkingautismguide.com/2017/10/helping-autistic-children-understand.html?
https://www.winstonswish.org/bereavement-service-professionals/
https://www.childbereavementuk.org/

https://www.amazon.co.uk/Stories-that-explain-stories-children/dp/1855036185  – Social Stories Book by Lynn McCann

https://www.andnextcomesl.com/2018/09/free-social-stories-about-death-and-funerals.html   –    Free social stories

http://www.socialworkerstoolbox.com/child-teen-grief-information-parents-caregivers Lots of resources on this site such as the one below:
https://victoriahospice.org/wp-content/uploads/2019/08/VH-ChildrenTeenGrief.pdf
https://www.elsa-support.co.uk  – small cost resources
http://blog.stageslearning.com/blog/autism-helping-understanding-death  – blog

childbereavementuk.org/supporting-a-bereaved-child-with-autism-spectrum-disorder – you tube video: https://youtu.be/P7EmW29Avx4

Autism and bereavement: https://www.youtube.com/watch?v=mzgtdtejQCs
Downloadable book to read with children. https://www.publichealth.hscni.net/sites/default/files/2020-04/Saying%20Goodbye%20children%2004_20.pdf