Fact sheet on telling a child about their diagnosis, for parents of a child with Autism or Asperger's syndrome


My ten-year-old son has started to notice differences between himself and his classmates. I would like to tell him about his diagnosis of Asperger syndrome. What is the best way to do this?


It is a very personal decision as to when families decide to tell a child about his diagnosis. Some children are told when they are younger as they become aware of their differences. Other children may already have low self-esteem or feel like they have something wrong. In these cases sometimes parents feel he should wait until their child is a bit older so they will understand it better.


There is no right way of telling your child. However, there are some points you may want to consider. Firstly, who is the best person in the family to talk to him about this? If your son is more comfortable with a grandparent or aunt, they may be a good person to get involved. Secondly, make sure that when you do tell him, you are both in calm moods. Children with an Autism Spectrum Disorder 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, he may find it difficult to take in and understand what you are trying to tell him. It is also important to ensure you will not be interrupted. Children with an Autism Spectrum Disorder often need extra processing time to think about what you have told them or to ask questions. Siblings interrupting in the middle of this could lead to unnecessary frustration.


One of the ways some parents will start the conversation is to talk first about differences. You could write a list of family members strengths and weaknesses. You can then discuss what your son is good at and what he finds difficult. You could then point out that there is a name to the pattern of strengths and weaknesses he has. Some children will become concerned that there is something wrong with them. You may need to emphasise to your son that Asperger syndrome is not a disease and you cannot die from it. Although it cannot be cured there are ways of helping him overcome some of the difficulties he has. Use concrete examples i.e. your support worker at school helps to keep you on track. You should also emphasise the things he is good at. You could try and get him to think of some of the things that he is good at that other children need help with at school.


Your son may have met other people with Asperger syndrome. As a result it is important to explain that although people with Asperger syndrome may share some difficulties, they are also all different. Your son may also like to meet other children with the same diagnosis as him. For some children it is a relief to meet other children with similar difficulties and to learn that they are not alone.


After your first talk, your son may have some ongoing questions. He may benefit from reading more books. There are now both novels and personal accounts written for children of varying ages (please refer to your nearest autism association for these).


'Different Like Me: My Book of Autism Heroes by Jennifer Elder has recently been published for children about famous people who may have had an Autism Spectrum Disorder. It talks about the achievements of people such as Albert Einstein, Kandinsky etc.


It is also important to keep open the lines of communication. 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 questions.


Finally, you could put together an achievement book. Some children will feel anxious about their diagnosis. Carol Gray has developed a workbook called Pictures of Me which is a social story written to introduce a student to his diagnosis as well as his personality and talents. Keeping an ongoing achievement book can also help remind your son of all the things Asperger syndrome helps him to be good at as well.


By Catriona Hauser

© The National Autistic Society 2003 This information is reproduced with the kind permission of The National Autistic Society who have many useful fact sheets on their site. Copyright is retained by www.autism.org.uk and their permission must be obtained to reproduce their material.

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When should parents tell a child about the Aspergers diagnosis? What is the best way to do this? Tips and discussion points are presented for parents of children on the autism spectrum.