TELLING YOUR CHILD ABOUT
THEIR DIAGNOSIS
My ten-year-old son has started to notice differences between
himself and his classmates. I would like to tell him about his diagnosis
of Asperger syndrome. What is the best way to do this?
It is a very personal decision as to when families
decide to tell a child about his diagnosis.
Some children are told when they are younger as they become aware
of their differences. Other children may already have low self-esteem
or feel like they have something wrong. In these cases sometimes
parents feel he should wait until their child is a bit older so
they will understand it better.
There is no right way of telling your child. However,
there are some points you may want to consider. Firstly, who is
the best person in the family to talk to him about this? If your
son is more comfortable with a grandparent or aunt, they may be
a good person to get involved. Secondly, make sure that when you
do tell him, you are both in calm moods. Children with an Autism Spectrum Disorder can find it difficult to process new information.
Their ability to process is even lower when they have high levels
of stress. As a result, he may find it difficult to take in and
understand what you are trying to tell him. It is also important
to ensure you will not be interrupted. Children with an Autism Spectrum Disorder often need extra processing time to think about
what you have told them or to ask questions. Siblings interrupting
in the middle of this could lead to unnecessary frustration.
One of the ways some parents will start the conversation
is to talk first about differences. You could write a list of family
members strengths and weaknesses. You can then discuss what your
son is good at and what he finds difficult. You could then point
out that there is a name to the pattern of strengths and weaknesses
he has. Some children will become concerned that there is something
wrong with them. You may need to emphasise to your son that Asperger
syndrome is not a disease and you cannot die from it. Although
it cannot be cured there are ways of helping him overcome some of
the difficulties he has. Use concrete examples i.e. your support
worker at school helps to keep you on track. You should also emphasise
the things he is good at. You could try and get him to think of
some of the things that he is good at that other children need help
with at school.
Your son may have met other people with Asperger
syndrome. As a result it is important to explain that although people
with Asperger syndrome may share some difficulties, they are also
all different. Your son may also like to meet other children with
the same diagnosis as him. For some children it is a relief to meet
other children with similar difficulties and to learn that they
are not alone.
After your first talk, your son may have some
ongoing questions. He may benefit from reading more books. There
are now both novels and personal accounts written for children of
varying ages (please refer to your nearest autism association for
these).
'Different Like Me: My Book of Autism Heroes
by Jennifer Elder has recently been published for children about
famous people who may have had an Autism Spectrum Disorder. It
talks about the achievements of people such as Albert
Einstein, Kandinsky etc.
It is also important to keep open the lines of
communication. Some children may have further questions but not
want to ask them face to face. Having a question box, diary or email
system, can make it easier for some children to ask personal questions.
It also gives them more time to process the answer or think of questions.
Finally, you could put together an achievement
book. Some children will feel anxious about their diagnosis. Carol
Gray has developed a workbook called Pictures of Me which
is a social
story written to introduce a student to his diagnosis as well
as his personality and talents. Keeping an ongoing achievement book
can also help remind your son of all the things Asperger syndrome
helps him to be good at as well.
By Catriona Hauser
© The National Autistic Society 2003 This information
is reproduced with the kind permission of The
National Autistic Society who have many useful fact sheets on
their site. Copyright is retained by www.autism.org.uk and their
permission must be obtained to reproduce their material.
Click here for the full
range of Asperger's and autism fact sheets at www.autism-help.org
See the Family
and Carer issues section of the website for more information.
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