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 Getting
Started: Introducing Your Child to His or Her Diagnosis of
Autism or Asperger Syndrome
by Marci Wheeler, Social Worker, Indiana Resource Center
for Autism
For more articles like this
visit
https://www.bridges4kids.org.
Who, what, when,
where, how, and why are all important questions parents ask
themselves when problem solving and making decisions about
issues in the lives of their children. Discussing an autism or
Asperger Syndrome diagnosis with your child is a very important
issue and one for which many parents seek advice. This brief
article will focus on aspects of explaining your child's
diagnosis to him or her, and about resources that can assist and
guide you.
Why Tell?
"Why tell my child about their diagnosis of an autism spectrum
disorder?" will probably be the first question parents ask
themselves. Parents go through a range of emotions when given
their child's diagnosis and hopefully find support as they begin
their journey with this new information about their child.
Sometimes siblings, grandparents, and other family members go
through a variety of emotions and stages of dealing with the
autism spectrum diagnosis of a family member. Isn't it
reasonable to consider that the child themselves should also be
given information about their diagnosis and support for
understanding and coping with this new information? All children
need to be understood and respected. At some point, people who
are successful have learned who they are, and accept and use
that information to help themselves become the best they can be
in life. Shouldn't children with an autism spectrum diagnosis
have the chance to understand and accept themselves by being
given information about their disability?
Parents may fear a number of things if they tell their children
(and sometimes others) about their child's disability. For
example, they may fear that their child will not understand,
that their child may lose some of his/her options in life, that
their child will become angry or depressed because they have a
disability, that the child (or others) will use the disability
as an excuse for why they can not do something, or even that the
child will think of themselves (or others will think of the
child) as a complete failure with no hope for a positive future.
These problems may or may not happen, but can be dealt with if
needed. Most of these problems and others may also surface
whether or not the child and others are told of the diagnosis.
Shouldn't all involved, the child included, have important
information about autism or Asperger Syndrome since the
diagnosis will affect various aspects of the child's life?
Certainly, the possibility of problems occurring is more likely
when someone is not told about their disability and given the
support they need. Consider the stories told by many individuals
with an autism spectrum diagnosis who were not told, and/or not
diagnosed until they were adults. Not understanding others or
social situations for many leads to poor interactions with
others and results in ridicule and isolation. Being told, "You
should know better" or "stop being so stupid" and not having a
clue what they did or how to "fix" or change the situation lead
to frustration and confusion. Many adults share how they felt,
they were seen as a major disappointment and failure to their
families and others, but had no clue why they failed or how to
do better. Over time, the end result can be low self esteem
and/or self acceptance problems among other issues. Many of
these individuals feel that with the correct information about
their diagnosis and what their differences are they now have a
better chance of being successful.
Your child may know that s/he is different, but like all
children at certain developmental stages they come to the wrong
conclusion about their perceived differences. They may even
wonder if they have a terminal illness and are going to die.
They see doctors and therapists and go for treatments, but are
not told why. Even the child or adult who does not ask and/or
verbally express concern about being different may still be
thinking those thoughts. Even children with autism spectrum
disorders, like all children, can sense the frustration and
confusion of others and make wrong assumptions about the cause
of the turmoil around them.
If the child is under 18 years old, it is the parent's decision
whether they share information about the diagnosis with their
child. It can seem like an overwhelming task, especially when
day-to-day issues consume all the time and energy of a family.
It may be helpful to discuss your concerns and possible options
for disclosure with others that know your child well, other
parents of children on the autism spectrum, and even individuals
with an autism spectrum disorder who have been told about their
diagnosis.
When to Tell?
There is no exact age or time that is correct to tell a child
about their diagnosis. A child's personality, abilities and
social awareness are all factors to consider in determining when
a child is ready for information about their diagnosis. Starting
too early can cause confusion. If older when told, they may be
extremely sensitive to any suggestion that they are different.
You can look for the presence of certain signs that the child is
ready for information. Some children will actually ask, "What is
wrong with me?," "Why can't I be like everybody else?," "Why
can't I _____?," or even "What is wrong with everyone?" These
types of questions are certainly a clear indication that they
need some information about their diagnosis. Some children,
however, may have similar thoughts and not be able to express
them well.
Some children do not get a diagnosis until they are in their
teens or older. Frequently those who are diagnosed later have
had some bad experiences that can influence the decision of when
to share information with them about their diagnosis. They may
not be emotionally ready to cope with the new information
because of the toll the bad experiences have taken on their
self-esteem and confidence. They may be very sensitive to any
information that suggests that they are different. Thus they are
not ready for any diagnostic information. On the other hand, an
older child may already know about a previous diagnosis such as
Attention Deficit Disorder, Conduct Disorder, and/or an
emotional disorder of some kind. Because of this history with
another label or diagnosis, it may be an appropriate time to
share the diagnosis and some concrete information about the
disability.
Many families have found that setting a positive tone about each
family member's uniqueness is a wonderful starting place. A
positive attitude about differences can be established if you
start as early as possible, and before the diagnosis is
mentioned. Everyone is in fact unique with their own likes and
dislikes, strengths and weaknesses, and physical
characteristics. Differences are discussed in a matter of fact
manner as soon as the child or others their age understand
simple concrete examples of differences. With this approach, it
is more likely that differences, whatever they are, can be a
neutral or even fun concept. Matter of fact statements such as
"Mommy has glasses and Daddy does not have glasses" or "Bobby
likes to play ball and you like to read books" are examples. The
ongoing use of positive concrete examples of contrasts among
familiar people can make it easier to talk about other
differences related to your child's diagnosis with him or her.
Many adults with an autism spectrum disorder express the view
that children should be given some information before they hear
it from someone else and/or overhear or see information that
they sense is about them. A child may have the view that people
do not like them and/or that they are always in trouble, but do
not know why. If given a choice, waiting until a negative
experience occurs to share the information is probably not the
best option.
What/How to Tell?
Autism spectrum disorders are complex. Everyone with a diagnosis
is unique. It is important that the process of explaining an
autism spectrum diagnosis to a child is individualized and
meaningful to them. A child should not be given too much
information. It can be hard to decide what and how much
information to begin with. If the child has asked questions, it
will give you a place to start. Make sure that you understand
what they are asking. Recall that it is easy to misinterpret the
meaning of their words.
Remember your child's ability to process information and try to
decide on what and how to tell. For those children who have a
keen interest in their diagnosis and those whose reading ability
is good, there are currently a few books written by children
with an autism spectrum diagnosis that may be of interest to
them (Hall, 2001; Jackson, 2003).
There are also many more books being written by adults with an
autism spectrum diagnosis. Some of these books are meant to be
read by any interested persons, but a few are meant to be read
by others with a diagnosis of an autism spectrum disorder. The
author with an autism spectrum diagnosis is reaching out to
others with a diagnosis by sharing experiences, sharing tips on
life's lessons, and helping the reader feel that they are not
alone in the journey of life (Gerland, 2000; Newport, 2001;
Willey,1999; Lawson, 2003).
Most children may need minimal information to start. More
information can be added over time. Be as positive as possible.
Your positive attitude and the manner in which you convey the
information is important. To make what you discuss with your
child meaningful, you can begin by talking about any questions
that s/he has asked. You may want to write down key points and
tell him or her that others with this diagnosis/disability also
have some of the same questions and experiences. Then you could
ask if they would like to find more information by reading
books, watching videos, and/or by talking with other people. If
asking your child if they want information is likely to get a
"no" response you may choose to not ask, but tell them that you
will be looking for information and would like to share it with
them. Let them know they can ask any question they want at any
time they want.
Frequently when individuals with an autism spectrum diagnosis
have an opportunity to meet others with a diagnosis, they find
it is an eye opening and very rewarding experience. Individuals
with an autism spectrum diagnosis can sometimes better
understand themselves and the world by interacting with others
who have an autism spectrum diagnosis. Interacting with others
on the autism spectrum can help individuals realize there are
other people that experience the world the way they do, and that
they are not the only one.
There are various possibilities for "meeting" others on the
spectrum. There are a few camps around the country that offer
various programs specifically for those on the autism spectrum.
There is the MAAP Services for the Autism Spectrum yearly
conference and the MAAP newsletter which frequently publishes
letters poems and other contributions from individuals of all
ages with an autism spectrum diagnosis. There are also various
listserv groups on the internet, some hosted by individuals with
an autism spectrum diagnosis. Carol Gray's Pen Pal Registry is a
project that helps school-aged students with an autism spectrum
diagnosis get connected with others. This interest in connecting
with people is something most of us can relate to, especially if
you've been in a foreign country for very long! Think about it.
Currently, there are a few workbooks that provide a structured
guide for the process of telling a child with an autism spectrum
diagnosis about their disability (Gray, 1996; Faherty, 2000;
Vermeulen, 2000). The workbook format is designed to provide
activities that help organize information about an autism
spectrum diagnosis as well as making the information more child
specific and concrete. The different lessons suggest how the
information is shared with the child. The worksheets can be
completed together by the child and a trusted adult. In many
cases they can also be modified for the different ages and
functioning levels of the child who would be using the
materials.
Who Tells/Where to Tell?
Certainly circumstances vary from family to family. If your
child is asking questions don't put off answering them. You
should be forthcoming and not suggest talking about it later.
Not providing an answer could increase the child's anxiety and
make the topic and information more mysterious.
For many families, using a knowledgeable professional to begin
the disclosure process instead of a family member or a friend of
the family might be the best option. Having a professional
involved, at least in the beginning stages of disclosure, leaves
the role of support and comfort to the family and those closest
to the child. For someone with an autism spectrum disorder, it
can be especially hard to seek comfort from someone who gives
you news that can be troubling and confusing. Having a
professional whose role is clearly to discuss information about
the child's diagnosis and how the disability is affecting
his/her life can make it easier for family members to be seen by
the child as supportive. The professional discussing information
with the child about his/her disability can also help the
parents understand the child's reaction and provide suggestions
for supporting their child. Having a professional involved also
allows the use of a location outside of the family home for
beginning this process.
Explaining an autism spectrum diagnosis to an individual can not
be done in one or two encounters. The individual needs time to
assimilate the new information about him/herself at their own
pace. It may take weeks or months before the child initiates
comments or asks questions about the new information. The
process of explaining an autism spectrum diagnosis is ongoing.
Making the information meaningful from the child's point of view
will greatly enhance the learning process. A positive focus
helps maintain self esteem and an effective atmosphere for
learning. There are materials available to help this learning
process and hopefully you have others that know your child who
can help support you and your child in this process. Now, is it
time for you to get started?
Resources
Faherty, C. (2000). What does it mean to be me? A workbook
explaining self-awareness and life lessons to the child or youth
with high-functioning autism or Aspergers. Arlington, TX: Future
Horizons, Inc.
Gerland, G. (2000). Finding out about Asperger Syndrome, high
functioning autism and PDD. Philadelphia, PA: Jessica Kingsley
Publishers, Ltd.
Gray, C. (1996). Pictures of me. Jenison, MI: Jenison Public
Schools.
www.thegraycenter.org
Hall, K. (2001). Asperger Syndrome, the universe and everything.
Philadelphia, PA: Jessica Kinsley Publishers Ltd.
Jackson, L. (2003). Freaks, geeks and Asperger Syndrome: A user
guide to adolescence. Philadelphia, PA: Jessica Kingsley
Publishers Ltd.
Lawson, W. (2003). Build your own life: A self-help guide for
individuals with Asperger syndrome. Philadelphia, PA: Jessica
Kingsley Publishers Ltd.
Newport, J. (2001). Your life is not a label. Arlington, TX:
Future Horizons, Inc.
Vermeulen, P. (2000). I am special: Introducing children and
young people to their autistic spectrum disorder. Philadelphia,
PA: Jessica Kingsley Publishers Ltd.
Vicker, B. (2003). Disability information for someone who has an
Autism Spectrum Disorder. Bloomington, IN: Indiana Resource
Center for Autism
Willey, L.H. (1999). Pretending to be normal: Living with
Asperger Syndrome. Philadelphia, PA: Jessica Kingsley
Publishers, Ltd.
Dr. Cathy Pratt, Director
Indiana Resource Center for Autism
Indiana Institute on Disability and Community
2853 East Tenth Street
Bloomington, IN 47408-2696
Phone: 1-812-855-6508
FAX: 1-812-855-9630
www.iidc.indiana.edu/irca
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