My four year-old child has just been diagnosed with high functioning autism. She knows that something is happening (doctor visits, tests, etc). How and when should she be told about her ASD?

Answer:

We can find very little research on this topic, however we can offer some advice to you and your family.
Telling your child that she has Autism, or any disability, is something that many of us find difficult. Finding the right moment and knowing how to go about it can be difficult too. Here are a few strategies that might be useful for your whole family.

• From when your child is a toddler, make the words ‘Autism’ part of your everyday language.
• When out and about, you might be able to point out someone who has a disability but is coping and succeeding in their life.
• Have books on Autism about the house. There are also books for children on this subject.
• Say ‘Autism Early Intervention program’ if your child is in an Autism Early Intervention, rather than calling it ‘kindergarten’ or ‘school’.
• When telling your child about Autism, say it is usually something people are born with or develop very early in life. We don’t know what causes it yet. There could be a number of reasons, but it is biologically based.
• Let her know there are positives as well as some negative aspects to Autism.
• Tell her it’s not her fault, nor of any other member of the family.
• Explain to your child that she may understand or learn some things differently to other children. Assure her that you will help her and that you can all learn from each other.
• Reassure your child that she has your love and support.
• Your child may encounter teasing from other children at school. To help her deal with this, she needs to know that she is different, and be able to say, ‘Yes I am different. All people are different, and so am I.’
• Your child may ask if others in the family have Autism. Answer honestly. If appropriate, mention the names of children she may know who have Autism so she doesn’t feel alone. If you do not know another person with Autism select someone from recent history – you could talk about their childhood and how they overcame difficulties in early life.
• If there are tears, it’s okay. Reinforce that you love her for who she is.

For other children:

• Explain to other children, ‘_______ does things differently because she has Autism. Sometimes she will be quicker than others at some things, but if she is having trouble understanding something we can help her.’
• Explain to other children how she may need plenty of warning when her routine is changed, or she may like certain music to keep calm, or she may not like loud noises or certain textures in food. This will vary according to each child.
• Once you start talking about Autism, other children will begin to ask questions. Answer these simply and as they come up, but don’t worry about explaining details until children are older.

We hope these suggestions are useful. In many ways children want to be included. Like any point of difference (e.g. adoption, disability, special skills) children want to know that they belong. They are worthwhile for who they are and their family love and support them. Their Autism will be something that they will learn to accept and come to terms with. Speaking about it with others but not mentioning it in front of your child could make her feel left out, or that there is something wrong with her. Her imagination could make her see the problem as greater than is the fact. Early discussion can help her grow to a confident, happy individual, and more open to learn new things about herself and the world.

By the OTARC Ask a Researcher Service  (Adapted with thanks from the Newsletter of the DSA of SA)