Information and discussion on telling your child about their Autism or Aspergers syndome - when, how and why
 
 

WHEN & HOW TO TELL YOUR CHILD THEY
ARE ON THE AUTISM SPECTRUM

"I’ve got a burger syndrome!" my nine-year-old son announced to his younger sister. "

Well he may as well have – with the amount of cheeseburgers he can devour in one sitting!"


Jokes aside, how do you tell your child that they have Asperger’s Syndrome? When is the best time to tell your child about their diagnosis? Hopefully, through my personal experience I can assist families with this awkward ‘moment’. It can be a little like telling them that they have cancer, or that Grandpa has died, or that Mummy and Daddy aren’t going to live together anymore. Your heart is breaking, you don’t know how they’ll react - and you keep putting off the inevitable.


Remember how you felt as a parent when you were told? You may have had mixed feelings. In one way you were relieved, because now you knew what ‘IT’ was, and in another, you felt a lump in your heart. Why us? Why our child?


If your child is mature enough to understand, they may also go through the same grieving and confusion as we, the parents did. Although the diagnosis can have a higher impact on the child because they are living it!

 

Possible reactions

There may be differing reactions, for example:

 

"Why me? I don’t want it – make it go away!"

The child can go into denial and suffer from depression. Then they’ll need your support while trying to absorb all the facts.

 

"I’m great, I’ve got Asperger’s Syndrome!"

The child hasn’t quite understood what the syndrome is about, and thinks it’s some kind of special game or title. Your child may feel relieved - at last they know why they have always felt ‘different’.


You may like to use these basic ‘tools’ when you’ve made the step to share the diagnosis with your child.


The Courage tool - how and when
to share the diagnosis with your child

When? A parent’s decision should be made based on their individual child. Is your child ready? Only you can answer this question. You know your child better than anybody else. Don’t be pressured to tell or not to tell. There is no ‘set’ age. Some parents tell their children immediately after diagnosis, others wait until they feel their child is able to cope with the information.

 

If your child starts asking questions about their needs, or if their stress levels are unusually high for no apparent reason, these may be the cues for you to sit them down. There’s a lot to be said for good old ‘mother’s instinct’ or ‘gut feeling’.


Are you ready? Do you have the courage to share the diagnosis? Do you require support? A friend, your partner, pediatrician, or other parents in a support group may assist you. Are you still dealing with the diagnosis? You need to be calm and confident, if you're child picks up that you are nervous or tense, they may feel afraid or think they have a ‘bad’ thing. You may choose to wait until you are armed with enough information to deal with your child's questions.


How? These are a few ways in which you can share the information with your child, visually and verbally. Some options worth considering are:


Videos obtained through your local support group or the Autistic Association of your State.


The social story book Pictures of Me by Carol Gray introduces a child with Asperger’s Syndrome to their individuality.


My booklet The Mystery of a Special Kid introduces Asperger’s Syndrome through clues, leading the child to solve the mystery about themselves. The booklet gives a basic explanation answering the how, what, when and why’s of Asperger’s Syndrome.


If your child is a capable verbal learner, then you may decide just to sit them down and have a face-to-face discussion about the diagnosis. You may like to do this on your own, with your partner, as a family, or with outside support, e.g.: Pediatrician, support group, or an older child with Asperger’s Syndrome.


The Support tool

There are various ways in which you can support your child after informing them. Various reactions have been denial, indifference, and depression. Here are some easy strategies you can put into place to support your child.


Talk openly with them and other family members about Asperger’s Syndrome, show them that it isn't a taboo subject.


Provide them with more information as a follow up to your first discussion.


Help build their confidence with self-esteem activities.


They may feel ready to share the diagnosis with their peers/classmates, discuss this with your child and if so, follow up with the class teacher on how and when to do this.


Ensure your child understands that they can come to you anytime with questions.


Have their pediatrician/psychologist/doctor confirm the diagnosis with the child.


Encourage your child to keep a diary/journal of their thoughts and feelings.

 

The Learning tool

There are various ways you can teach your child to look at themselves as individuals and in helping them to gain independence and self-esteem.


It is important for your child to continue their journey of learning about Asperger’s Syndrome, that it’s not going to ‘go away’, but that they can learn to live with it and be happy and successful.


Some ways to assist your child to do this are:
Join the local Asperger’s Syndrome support group.


Explain that they are not ‘alone’, find a chatroom on the Internet where your child can talk with other kids with Asperger’s Syndrome.


Attend social skills classes.


Encourage them to write to another child with Asperger’s Syndrome. (The Morning News Pen Pal Registry).


Explain the importance of timetables, charts, and diaries. They will become essential tools for your child as they grow into adulthood. (Let’s be honest, how many of us can get by without timetables, charts and diaries!)

 

Click here to read a personal story by Josie Santomauro on how she told her son about his Asperger's syndrome.

 

Click to close fact sheet on when to tell your child about their Autism Spectrum Disorder

Copyright Josie Santomauro. A conference paper first published at the autism99 conference on the worldwide web, November 1999. Reproduced with the author's permission from her site at: www.booksbyjosie.com.au

Click here for the full range of Asperger's and autism fact sheets at www.autism-help.org
This autism fact sheet is under copyright www.autism-help.org

   
   
Choosing when and how to tell your child they have Asperger's syndrome or Autism can be difficult for parents. Josie Santomauro provides some suggestions and practical tips for other parents of kids on the autism spectrum.