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
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!
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
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
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
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
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
Have their pediatrician/psychologist/doctor confirm the diagnosis
with the child.
Encourage your child to keep a diary/journal of their thoughts and
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!)
to read a personal story by Josie Santomauro on how she told her
son about his Asperger's syndrome.
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