Her brother has autism. How can we support our daughter?

Because I have been focused on her brother, I think I have not been there for her as much

My eight-year-old son has always been challenging to bring up and was diagnosed earlier this year with ASD (Autistic Spectrum Disorder). He is getting on better in school and we are all coping better.

However, I am writing in about his nine-year-old sister (10 in September), who I realise now I have been neglecting. She is a great girl who has had to cope with her brother’s challenging behaviour as much as me. Because I have been focused on her brother all this time, I think I have not been there for her as much. Over the summer, she has had a few tantrums herself and burst into tears about how she feels we are always letting her brother away with things and not her. It made me stop and think. Do you have any advice as to how to best help her?

Raising a child with special needs such as ASD is definitely a family affair. There are particular challenges (and joys) that affect parents, siblings and the child with ASD in different ways and all family members can benefit from some special consideration and support. I am glad to hear you are making progress in getting the support you need to care for your son and it is great that you are now thinking of the needs of your older daughter. Below are some suggestions on how to help her.

Listen to her carefully

Take time to listen to her about her experience as a sister. Go back to her after an “outburst” and encourage her to talk more – “you were saying earlier you feel that we let your brother away with things, tell me more about when this happens and how you feel”. Compliment her about being able to talk (even if it only comes out when she is upset) – “I am really glad that you were able to tell me how you were feeling – I really want to know what you feel and think”. Try not to be defensive if she tells you things that are hard to hear and instead encourage her to talk. For example, it is very common for siblings of children with special needs to:

  • Feel that their parents give their sibling more time and attention;
  • Think their parents don't treat them fairly (eg giving them more household chores and not correcting siblings mean behaviour towards them);
  • Feel frustrated and struggle in their own relationship with their brother or sister.

Take time to explain ASD to her

Take time to explain what her brother’s ASD means and how it relates to his behaviour. For example, you might say “his ASD can make him get agitated and anxious and it is hard for him to calm down”. There are some excellent books and resources online that could start a conversation between the two of you. Help her understand her role as older sister and learn how she can play with and relate to her brother. For example, she might discover that joining with him on some of his special interests might help her understand him etc. Make sure to praise and encourage her any time you see her showing care and understanding towards her brother (as well as praising her brother anytime he does the same).

Set aside special time with your daughter

Help your daughter feel special, by making sure you have a regular one-to-one time with her. Ideally, this should be a daily time such as going for a walk, reading before bed or having a daily ‘chatting time’ with her. You could also set up one or two special weekly activities that don’t involve her brother, such as going swimming or shopping together. To arrange these times you might have to enlist the support of a partner or another family member who looks after your son during these times. With two parents, it is good idea to set up a routine of alternating one-to-one times with your children – while you have one-to- one time with your daughter, her other parent has one to one time with your son and vice-versa at other times.

Work hard at being fair Being fair and impartial as a parent is crucial to supporting all sibling relationships, but is particularly important when one child has special needs. While occasionally you have to make allowances, you should aim to treat them fairly as much as possible. For example, whatever a child’s special needs, you need to work hard at correcting any mean or aggressive behaviour towards their siblings.

In addition, it is important to insist that all children do their fair share and take some part in household chores (according to their age and ability). Indeed, you will do your son a disservice if you don’t have expectations for him around his behaviour and don’t teach him how to be respectful and responsible. Set family rules around being kind and respectful, sharing and helping out and hold everyone to account for this.

Seek support

Consider seeking support for your daughter from the services your son currently attends. Many disability services recognise the needs of siblings as much as the children with special needs. Some organise special supports for siblings such as group programmes for brothers and sisters (siblingsupport.org/sibshops) which would allow your daughter to meet other children dealing with similar issues. If a formal group is too daunting for your daughter, you could alternatively make contact with another family with a child with ASD and create the opportunity for her to form friendships with the siblings her own age.

Finally, remember that most siblings of children with special needs grow up well adjusted and develop an understanding and caring relationship with their brother and sister. All they usually need is a little bit of understanding and acknowledgment of their experience of being a sibling in a special family.

  • Dr John Sharry is a social worker and psychotherapist and co-developer of the Parents Plus Programmes. He has published 14 books including Parenting when Separated – Helping your Children Cope and Thrive. See solutiontalk.ie