Diagnosis: telling a child about their diagnosis

1. When should I tell my child they have an autism spectrum disorder (ASD)?
It is a very personal decision as to when families decide to tell a child about their diagnosis it all depends on personal circumstances. Some children are told when they are young as they become aware of their differences. In other cases parents/carers feel they should wait until their child is a little older so they will understand the diagnosis better.

2. How should I tell my child about their diagnosis?
There is no one right way of telling a child. However, there are some points you may want to consider. Firstly, who is the best person in the family to help bring up the subject? If your child is comfortable with a grandparent or aunt, they may be a good person to get involved, too. Secondly, make sure that when you do tell your child, you are both in calm moods and in a place where you both feel comfortable as children with an ASD can find it difficult to process new information. Their ability to process is even lower when they have high levels of stress. As a result, they may find it difficult to take in and understand what you are trying to tell them.

It is also important to ensure you will not be interrupted because your child may need need extra processing time to think or to ask questions about what you have told them. Siblings interrupting in the middle of this could lead to unnecessary frustration.

If you have other children you may want to talk to them separately about your child's condition. You will need to adapt how you explain what autism is depending on the sibling's age. We have an information sheet called Families: supporting brothers and sisters which you can refer to for ideas how to do this and some of the questions siblings may ask. This is available on our website www.autism.org.uk/-a-z or from the Autism Helpline on 0845 070 4004.

There are also a number of books aimed at explaining what autism is to siblings which are available from our publications distributors (please see details at the bottom of this page).
 
One of the ways some parents start the conversation when explaining the condition to their child with an ASD is to talk first about differences. You could extend this by writing a list of family members strengths and weaknesses. You could then discuss what your child is good at and what they find difficult. You could then point out that there is a name to this particular pattern of strengths and weaknesses.

Some children will become concerned that there is something seriously wrong with them which will affect their health. You may need to emphasise that autism is not a disease and no one can die from it. Although it cannot be cured there are ways of helping to overcome some of the difficulties it brings. Use concrete examples, such as: 'Your support worker at school helps you with tasks you find difficult'. You should also emphasise the things they are good at. You could also try and get your child to think of some of the things that they are good at that other children need help with at school.

Your child may have met other people with autism. It is important to explain that although people with autism may share some difficulties, they are also all different.

3. What if my child wants to meet other children with an ASD?
Some children find it helpful to meet other children with similar difficulties and to learn that they are not alone. There are a number of social groups around the country. The NAS runs social programmes for the over 16s and there may also be an NAS branch or other parent support group near to you where you can meet other families. Details of these can be found on our directory www.autismdirectory.org.uk  Alternatively, you can contact the Autism Helpline on 0845 070 4004 for details of services.

4. Are there any books or resources that could help explain ASD to my child?
After your first talk, your child may have some ongoing questions. They may benefit from reading some books on the subject. There are now accounts written for children of varying ages.

4-9 years
*Larson, E. M. (2006). I am utterly unique: celebrating the strengths of children with Asperger syndrome and high functioning autism. Autism Asperger Publishing Company

*Doherty, K., McNally, P., and Sherrard, E. (2000). I have autism. What's that? Down Lisburn Trust
This cheerful book helps children and young people with autism discover how that are different from neurotypical people.

*Eye Television (2006). A different life: Rosie's story (DVD).
Rosie is a girl with classic autism and here is her story, told through the eyes of her brother. Originally shown on Channel 5, this DVD is aimed at children aged five to 11.

8-12 years
*Elder, J. (2006). Different like me. My book of autism heroes. London: Jessica Kingsley Publishers.
This book is about famous people who may have had an ASD. It talks about the achievements of people such as Einstein, Kandinsky, etc.

*Autism Helpline (1999). What is Asperger syndrome and how will it affect me? A guide for young people.
Written by members of the NAS Helpline, this booklet explains Asperger syndrome in simple jargon-free language. It also offers helpful contacts and strategies for making life more comfortable.

*Vermeulen, P. (2000). I am special: introducing children and young people to their autistic spectrum. London: Jessica Kingsley Publishers
Aimed at young people over the age of ten with autism spectrum disorder, this workbook is designed to be worked through with an adult - parent, teacher or other professional. The content and layout are devised especially for children who process information differently.

*Doherty, K., McNally, P., and Sherrard, E. (2000). I have autism. What's that? Down Lisburn Trust.
This cheerful book helps children and young people with autism discover how that are different from neurotypical people.

*Gerland, G. (2000). Finding out about Asperger syndrome, high-functioning autism and PDD. London: Jessica Kingsley Publishers
Gunilla's book can be helpful to all young people who receive a diagnosis of Asperger syndrome, PDD or high-functioning autism. It will also be of interest to their peers in school, siblings, and other children.

*Jackson, L. (2002). Freaks, geeks and Asperger syndrome. London: Jessica Kingsley Publishers
Luke has Asperger syndrome. He was aware how little information there was for teenagers like himself so, with the help of his teenage brothers and sisters, he wrote this honest and witty book when he was 13. It covers a host of tricky teenage topics, including bullying and dating.

12years +

*The National Autistic Society (2008). Being Me. London: The National Autistic Society

Being Me is a CD-ROM and DVD set. The DVD focuses on people with an ASD talking about their experiences in a series of short film clips. Its a useful way of introducing the idea of the autism spectrum to newly diagnosed young people and adults and encouraging discussion about what it means to be on it. Many people with an ASD find that they benefit from visual learning and have enjoyed using the DVD. The scripts for each film clip were written by people on the autism spectrum.

Alongside the DVD, there is a CD-ROM with ten session plans on it. Topics include:

• feelings around diagnosis
• the positive aspects of being on the autism spectrum
• disclosure
• socialising
• employment.

The Autism Helpline has also written an information sheet entitled What is Asperger syndrome and how will it affect me? This is aimed at older children.

5. What else could I do if my child feels anxious about the diagnosis?
It is important to keep lines of communication open. Some children may have further questions but not want to ask them face to face. Having a question box, diary or email system can make it easier for some children to ask personal questions. It also gives them more time to process the answer or think of more questions.

Some may feel anxious about their diagnosis. It may help if you create an achievement book. Carol Gray has developed a workbook called Pictures of me which is a social story written to introduce a student to their diagnosis as well as their personality and talents. An article on how to write this was published in the NAS membership magazine, Communication, Winter 1997: a copy of this article can be requested from our Information Centre, contactable via the Autism Helpline. Keeping an ongoing achievement book can also help remind your child of all the things Asperger syndrome helps them to be good at.

To contact the Autism Helpline, please telephone 0845 070 4004 or email autismhelpline@nas.org.uk  To contact the Information Centre please call the same number and press 2 when prompted.

6. If my child wants to tell his friends at school what resources could I give to the teacher to help with this?
Our Helpline has written a lesson plan for teachers which can be used with the class to help with their understanding of autism spectrum disorder. An autism awareness pack for teachers can be downloaded from our website.

A range of books which teachers will find useful is available from our publications catalogue which can be seen online at www.autism.org.uk/pubs or requested from the Autism Helpline on 0845 070 4004.

Useful books for families

Ariel, C. N. and Naseef, R. A. (2005). Voices from the spectrum: parents, grandparents, siblings, people with autism and professionals share their wisdom. London: Jessica Kingsley Publishers

*Attwood, T. (1993). Why does Chris do that? Some suggestions regarding the cause and management of the unusual behaviour of children and adults with autism and Asperger syndrome. London: The National Autistic Society

*Attwood.T. (1998). Aspergers syndrome:  a guide for parents and professionals. London: Jessica Kingsley Publishers

*Bleach, F. (2001). Everybody is different: a book for young people who have brothers or sisters with autism. London. The National Autistic Society

*Davis, J. (1994). Able autistic children children with Asperger syndrome: a booklet for brothers and sisters. The Early Years Diagnostic Centre

*Fairfoot, E. and Mayne, J. (2004). My special brother Rory. London: The National Autistic Society

*Gorrod, L. (1997). My brother is different. London: The National Autistic Society

*Haddon, M. (2004). The curious incident of the dog in the night-time. London: Vintage

Harris, S. L. (1994). Siblings of children with autism: a guide for families. Bethesda: Woodbine

*Hoopman, K. (2000). Blue bottle mystery. London: Jessica Kingsley Publishers

*Hunter, T. H. (2006). My sister is different. London: The National Autistic Society

*Jackson, L. (2002). Freaks, geeks and Asperger syndrome. London: Jessica Kingsley Publishers

*Koutsis, A., De Clercq, G., and Galbraith, R. (2006). What about me? The autism survival guide for kids. Australia: The Wantirna Heights School

*Nally, B. (1999). Diagnosis reactions in families: focus on the family. Series Booklet 1. London: The National Autistic Society

*Nally, B. (2002). Experiences of the whole family: focus on the family. Series Booklet 4.  London: The National Autistic Society

*Pike, R. (2008). Talking together about an autism diagnosis: a guide for parents and carers of children with an autism spectrum disorder. London: The National Autistic Society

*Welton, J. (2003). Can I tell you about Asperger syndrome? A guide for family and friends. London: Jessica Kingsley Publishers

*Wing, L. (2006). What's so special about autism? London: The National Autistic Society

*If an item is marked as available from the NAS please contact:
NAS Publications
Central Books Ltd
99 Wallis Road
London E9 5LN
Tel: +44 (0)845 458 9911
Fax: +44 (0)845 458 9912
Email: nas@centralbooks.com
Online orders: www.autism.org.uk/pubs

If you require further information please contact the NAS Autism Helpline
Tel: 0845 070 4004
autismhelpline@nas.org.uk

Last updated: October 2008
© The National Autistic Society 2008
The National Autistic Society is the UKs leading charity for people affected by autism

Related resources

• What is Asperger syndrome and how will it affect me? Author: Martine Ives Code: NAS 078 £1.50 excl. vat £1.50 incl. vat

• Different like me: my book of autism heroes Author: Jennifer Elder Code: NAS 634 £11.99 excl. vat £11.99 incl. vat

• I am special: introducing children and young people to their autistic spectrum disorder Author: Peter Vermeulen Code: NAS 394 £19.99 excl. vat £19.99 incl. vat

• Finding out about Asperger syndrome, high-functioning autism and PDD Author: Gunilla Gerland Code: NAS 400 £5.95 excl. vat £5.95 incl. vat