Sharing the Diagnosis with Your Child
There is no right or wrong time to share the diagnosis of autism spectrum disorder (ASD) with your child. Every situation is different and every child is unique. There is no “one size fits all” approach to telling your child that they have ASD. You are the expert on your child and you should trust your instincts. But, there are some things to consider and some useful resources which you may find helpful when tackling this situation.
To share or not to share, that is the question?
Many parents fear sharing the diagnosis with their child. This is a natural response as none of us want to hurt our children by giving them negative news about themselves. We wonder if they might be better off not knowing. After all, you can’t see ASD. We fear that a label may cause other people to react differently or even negatively towards our child. If the behaviours are not obvious, we hope that they will go unnoticed by others. We worry that a label is for life and that may impact on future opportunities.
Social differences, however, rarely stay unnoticed forever. At some point during the primary school years, your child and the children at school are highly likely to become aware of the differences. Without anyone telling them, children notice. They even notice the subtle differences shown by those who are high functioning. It is our reaction and management as adults that will make all the difference.
Without clarification, children with ASD often assume a negative explanation for their difficulties. Something along the lines of “I’m stupid”, “I’m not liked” or “I’m a loser”. This opinion becomes more entrenched over time with every social rejection they experience and with every piece of negative feedback from the Teacher.
To avoid this unhelpful progression, it is beneficial to the child to provide information in a way that that is compatible with their age and level of ability.
What do I say to my child?
Start by talking about strengths and weaknesses. We all have things that we are good at and things that we are not so good at. Identify some of your own strengths and weaknesses to demonstrate the point.
Next, discuss your child’s strengths. Talk about what he / she is good at. In addition to talents he / she may have (e.g. being good at drawing, sport or school work), identify personal characteristics such as being honest, loyal, punctual, determined, logical, direct and having an ability to focus on detail. Discuss how these characteristics can be helpful in life.
Then talk about what it is that he / she is finding difficult in everyday life. It will probably involve aspects of communication (e.g. holding a two-way conversation, being able to resolve conflict, using body language and voice appropriately, adapting conversation to the person or context, understanding non-literal language such as idioms and jokes etc.), social interaction (e.g. being able to use eye and facial expression in conversation, understanding emotions in self and others, knowing and responding to the unwritten social rules, making and keeping friends etc.) and flexible thinking (e.g. difficulty when asked to use imagination, liking routine and structure, disliking change, showing repetitive behaviours, being focused on detail and not the bigger picture etc. ). Use examples from everyday life to make sure your child understands what you are saying.
Having identified the weaknesses, it is then important to tell your child that the best response to knowing about his / her weakness is to get some help so that he / she can develop and have better day to day experiences. Tell your child that these skills can be improved with support. There will be other children your child knows who will be receiving help for an area of weakness. A child who cannot see properly wears glasses and a child who cannot spell or do Maths well may get extra help from the Teacher. In the same way, if someone is having problems making friends or managing their emotions, they should be offered help.
Having identified areas of weakness, you can tell your child that there is a name for these difficulties and it is called an “autism spectrum disorder”. If you don’t want to use the word disorder, then explain that it is called the “autism spectrum”.
I would suggest sharing information about people with ASD who have been successful in their own lives to show your child that ASD does not mean being unable to make positive contributions to this world.
This perspective enables your child to view his / her problems in a balanced way (by covering strengths as well as weaknesses) and from a proactive positive perspective (I can get help to improve the situation).
When to tell my child?
A very young child would not be able to process all the above information. You can still share some information in bite size chunks as and when it is appropriate to do so. Be sure to praise him/ her when you see positive behaviours and strengths on display. This will help to build their self-confidence and give them a clear mental picture of their strengths in due course. When weaknesses are demonstrated, acknowledge them (I can see that you find that tricky) and suggest that you look for a way to make it easier.
As your child gets older (from around the age of 7 years), they may begin to develop some insight into their areas of difficulty. These children do need an explanation to avoid them adopting their own negative interpretation. This is especially relevant for the child with normal range intelligence. If your child has learning difficulties or very limited insight, then the approach should be as for a younger child – bite size information as and when it is relevant.
Pick a time when your child is relaxed and calm. This may be over a weekend or during the school holidays. Avoid times when your child is tired or stressed. You may refer to incidents to help with your explanation but do not discuss the diagnosis in the middle of an emotionally charged situation. Keep your tone of voice neutral and avoid showing any negative emotions that you may feel in relation to the diagnosis. If your child asks questions and you don’t know the answer, say you are not sure but that you will try to find out.
Sharing with the wider family and school
Many parents wonder if the information should be shared with others or if this would be an unwise choice. As stated above, every situation has different dynamics and you are the best person to make the decision.
Grandparents
If grandparents are actively involved in the care of our child, then they should ideally be included in the discussion on diagnosis as management should be consistent across different environments. Many grandparents will have a view of autism that is consistent only with core autism and possibly not including those who are higher functioning. If this applies to your situation, you will need to give background information which may include some literature so that they have access to current thinking on ASD.
Siblings
Siblings often must make concessions for their brothers or sisters with ASD. Attention may be focused on the child with obvious difficulties and they may have to put their needs and wishes on hold because of more immediate parental concerns. They may not be able to do certain things because the sibling with ASD will not tolerate the experience. They may feel frustrated because they don’t have a sibling who can play with them in the more typical way. And they may be subject to outbursts from the sibling with ASD.
Siblings also need an explanation for their brother or sister’s behaviour. it is far easier to deal with a negative behaviour and to help develop positive behaviours when you understand why they are there in the first place. Knowing that the behaviours are not usually intentional can make all the difference in how siblings react. If they are old enough (e.g. teens), they should also be included in agreed management strategies so that there is consistency in response which is important for the child with ASD.
School Staff
It is essential that a diagnosis is shared with school staff. Children with ASD often display behaviours atrt can be interpreted as being deliberately defiant or cheeky. Usually, they are responding to the literal message and their intentions have nothing to do with being rude or rebellious. Also, children with ASD may experience stress suing lessons like play time, lunch time, physical education, music and art. This is because these sessions tend to be less structured and involve lots of sensory experience (e.g. noise on the playground, smells in the lunch hall, messy hands in the art room etc.). Physical education and games lessons can be difficult because of problems with co-ordination and the need to work in groups in a less structured way. Most children enjoy the freedom of the playground and return to the classroom in a more relaxed state after their break. But this can be the opposite for the child with ASD. It is also a time when the adult to child ratio goes down and teachers may not be aware of problems outside. In view of this, teachers do need to be made aware of the problems your child is experiencing. Many children internalise their difficulties and only show their true feeling before or after school when there is a meltdown. Autism is often referred to as the hidden disability because many of the issues are not immediately apparent. Informing staff puts them able to do something to help the child and changes their perspective on the way they view behaviours which might otherwise be sass as naughty. For more information on schools, please click on …… to access the schools guide.
Supporting Material
For the child with ASD
- Levi T, Dura-Vila G (2013) My Autism Book: A child’s Guide to their Autism Spectrum Diagnosis Jessica Kingsley Publishers (5+ years)
- Ives M, NAS helpline (2002) What is Asperger Syndrome and how will it affect me? (8-13 years) Autism Asperger Publishing
- (2015) I am an Aspie Girl. A Book for Young Girls with Autism Spectrum Conditions (5+ years)
- Reeves F (2015) The Children’s Guide to Autism CreateSpace Independent Publishing Platform (6-9 years)
- Verdick E, Reeve E (2012) Survival Guide for Kids with Autism Spectrum Disorders Free Spirit Publishing
For friends and family
- Brock, C (2007) My Family is Different. A Workbook for Children with a Brother or Sister Who has Autism or Asperger Syndrome (4-9 years) National Autistic Society
- Gorrod L (2000) My Brother is Different. A book for Young Children who have a Brother or Sister with Autism. National Autistic Society
- Tamsin-Hunter S (2006) My Sister is Different. National Autistic Society
- Bleach, F (2002) Everybody is Different. A Book for Young Peple who have Brothers or Sisters with Autism (8-13 years) Autism Asperger Publishing
- Brock, C (2010) I’m a teenager. Get me out of here. A Survival Guide for the Teenage Siblings of Young People with Autism. National Autistic Society
- Welton J (2003) Can I tell you about Asperger Syndrome? A Guide for Friends and Family. Jessica Kingsley Publishers (8-12 years)
- Welton J Can I tell you about Autism. A Guide for Friends, Family and Professionals (7+ years)
- Bishop B. (2011) My Friend with Autism: A Colouring Book for Peers and Siblings Future Horizons
For school staff
- Hannah L (2014) My Friend Sam: A Story About Introducing a Child with Autism to Nursery School National Autistic Society
- Honeybourne, V (2016) Educating and supporting Girls with Aspergers and Autism: A Resource for Education and Health Professionals. Speechmark Publishing
