Should
You Explain the Diagnosis to the Child?
by
Tony Attwood, Ph.D.
The immediate answer is yes. Clinical experience indicates
that it is extremely
important that the diagnosis is explained as soon as possible
and preferably before inappropriate compensatory mechanisms
are developed. The child is then more likely to achieve
self-acceptance, without unfair comparisons with other children,
and be less likely to develop signs of an anxiety disorder,
depression or conduct disorder.
When and How do you Explain the Diagnosis?
At what age do you explain the diagnosis? Children who are
younger than about eight years may not consider themselves
as particularly different to their peers, and have difficulty
understanding the concept of a developmental disorder as
complex as Asperger's syndrome. The explanation for young
children will need to be age appropriate and provide information
that is relevant from the child's perspective. The main
themes will be the benefits of programs to help the child
make friends and enjoy playing with other children, and
to help in learning and achieving success with school work.
There can be a discussion and activities to explain the
concept of individual differences, for example, those children
in the class who find it easy to learn to read, and others
who find it more difficult. The clinician or parents can
then explain that there is another form of reading, namely
reading people and social situations, and that we have programs
to help children who have this particular reading difficulty.
The Attributes Activity
For children over the age of about eight years, the author
has developed the
Attributes Activity to explain the diagnosis to the child
and family, including siblings and grandparents. The author
arranges a gathering of family members, including the child
or adolescent who has recently been diagnosed as having
Asperger's syndrome. The first activity is to have temporarily
attached to the wall of the room large sheets of paper,
or to have the use of a large white board with coloured
pens. Each sheet is divided into two columns, one column
headed `Qualities' and the other `Difficulties'. The author
suggests the child's mother or father as the first person
to complete the activity, which involves identifying and
listing both personal qualities and difficulties (these
can include practical abilities, knowledge, personality
and passions). After the first focus person has made his
or her suggestions, which the clinician writes on the paper/board,
the family adds their own suggestions. The clinician ensures
that this is a positive activity, commenting on the various
attributes and ensuring that there are more qualities than
difficulties. Another member of the family is then nominated
or volunteers to suggest his or her qualities and difficulties.
The child or adolescent with Asperger's syndrome is able
to observe and participate, and understands what is
expected when it is time for his or her turn. Sometimes
the person with Asperger's syndrome is reluctant to suggest,
or may not consider him- or herself to have, many qualities
or attributes. The family is encouraged to make suggestions
and the clinician can nominate a few suggestions from knowledge
of the person. There will need to be some care when nominating
difficulties so that the person does not feel victimized.
The following is a representation of the Attributes Activity
for a child with Asperger's syndrome.
Qualities |
Difficulties |
| Honest |
Accepting
mistakes |
Determined
expert on insects and the Titantic |
Making
friends |
| Aware of sounds that others cannot
hear |
Taking
advice |
| Kind |
Managing
my anger |
| Forthright |
Handwriting
|
| A loner (and happy to be so) |
Knowing
what someone is thinking |
| A
perfectionist |
Avoiding
being teased |
| A
reliable friend |
Showing
as much affection as other family members expect |
| Good
at drawing |
Tolerating
specific sounds |
| Observant
of details that others do not see |
Explaining
thoughts using speech |
| Exceptional
at remembering things that other people have forgotten |
Coping
with surprises |
| Humorous
in a unique way |
|
| Advanced
in the knowledge of mathematics |
|
| Liked
by adults |
|
The clinician comments on each quality and difficulty nominated
by the child with
Asperger's syndrome and then explains that scientists are
often looking for patterns; when they find a consistent
pattern, they like to give it a name. Reference is then
made to Dr Hans Asperger who, over 60 years ago, saw at
his clinic in Vienna many children whose characteristics
he observed to be similar. He published the first clinical
description that has become known as Asperger's syndrome.
The author usually says to the child, `Congratulations,
you have Asperger's
syndrome', and explains that this means he or she is not
mad, bad or defective, but has a different way of thinking.
The discussion continues with an explanation of how some
of the child's talents or qualities are due to having Asperger's
syndrome, such as his or her extensive knowledge about spark
plugs, ability to draw with photographic realism, attention
to detail and being naturally talented in mathematics. This
is to introduce the benefits of having the characteristics
of Asperger's syndrome.
The next stage is to discuss the difficulties and the strategies
needed to improve
specific abilities at home and at school. This can include
the advantages of programs to improve social understanding,
Cognitive Behaviour Therapy and/or medication that can help
with emotion management, and ideas and encouragement to
improve friendships. The clinician provides a summary of
the person's qualities and difficulties that are due to
having Asperger's syndrome, and mentions successful people
in the areas of science, information technology, politics
and the arts who benefited from the signs of Asperger's
syndrome in their own profile of abilities (Ledgin 2002;
Paradiz 2002).
Hans Asperger wrote that:
It seems that for success in science or art, a dash of autism
is essential. For success, the necessary ingredient may
be an ability to turn away from the everyday world, from
the simply practical, an ability to re-think a subject with
originality so as to create in new untrodden ways, with
all abilities canalized into the one specialty. (Asperger
1979, p.49.)
As Temple Grandin , a woman who has Asperger's syndrome
who has become a
successful engineer, author and academic, said, `If the
world was left to you
socialites, we would still be in caves talking to each other'.
The Attributes Activity can also be used with adults and
family members or partner. If using the activity with a
couple where one partner has Asperger's syndrome, the author
asks the typical partner to explain his or her love for
the partner with Asperger's syndrome, and what the appeal
was when they first met. The author has noted that the attributes
of the partner with Asperger's syndrome can include being
physically attractive (the silent handsome stranger) and
loyal, having a remarkable intellect and original ideas,
being a man with a feminine side, being a challenge to get
to know and, during the time of dating, being very attentive.
As with all relationships, over time other attributes become
more noticeable and some diminish, but a few of the relationship
attributes can be explained as being associated with the
characteristics of Asperger's syndrome in an adult.
When explaining the development of the profile of abilities
associated with Asperger's syndrome to an adolescent or
adult, the author sometimes uses the metaphor of a clearing
in a forest. The clearing represents the development of
the brain, and the emergence of plants and saplings in the
clearing represents the development of different brain functions.
In the clearing, one sapling grows very rapidly and creates
a canopy above the other plants and a root structure that
restrict access to sunshine and nutrients, thus inhibiting
the growth of competing plants. The dominant sapling, which
soon becomes a tree, represents the parts of the brain dedicated
to social reasoning. If that `social reasoning' sapling
does not develop quickly and become dominant, then other
trees, or abilities, may become stronger. These plants represent
abilities in mechanical reasoning, music, art, mathematics
and science, and the perception of sensory experiences.
The person may then see Asperger's syndrome as an explanation
of his or her talents as well as difficulties.
The Attributes Activity closes with explanation of some
of the author's personal
thoughts on Asperger's syndrome. Such individuals have different
priorities,
perception of the world and way of thinking. The brain is
wired differently, not
defectively. The person prioritizes the pursuit of knowledge,
perfection, truth, and the understanding of the physical
world above feelings and interpersonal experiences. This
can lead to valued talents but also vulnerabilities in the
social world, and will affect self-esteem. The person will
perceive the diagnosis according to how the clinician explains
it.
Who else needs to know?
After explaining the diagnosis to the child or adult, it
is important to discuss who else needs to know. Children
may be concerned about how their peers will respond to the
news and any potential negative reaction. Adults will want
to know if it is wise to tell friends, prospective employers
and colleagues. The clinician will examine and discuss the
issues surrounding disclosure for the client, based on his
or her circumstances, the advantages and disadvantages of
certain people knowing, and how much information to disclose.
The child's opinion is respected regarding the question
of whether or not peers
should be told. If the child does want the other children
to know, there needs to be an agreement as to how widely
the information will be disseminated, who will provide the
explanation, how, and whether the child with Asperger's
syndrome should be present. Carol Gray has developed a program,
The Sixth Sense, to explain Asperger's syndrome to a class
of children in an elementary or primary school (Gray 2002).
She has designed a range of classroom activities based on
learning about the five senses that is extended to include
a sixth sense, the perception of social cues. Children can
then discover what it would be like to have difficulty perceiving
the social cues and thoughts and feelings of others, and
what they can do to help someone develop the sixth sense.
We now have other published resources to help explain Asperger's
syndrome to peers and siblings (see resources section of
this chapter).
An adult who has recently been diagnosed will also need
to discuss who to tell and how to explain Asperger's syndrome
to the family, social network and work
associates. Some adults have a more reserved personality
and are very cautious
regarding disclosure, deciding to limit the news to carefully
selected individuals.
Other adults are more open and brazen in their disclosure.
Liane Holliday Willey
chose to have a `coming out party', while others have had
a special T-shirt created with a message such as, `Asperger's
and Proud' or `Asperger's - a different way of thinking'.
The diagnosis is then very conspicuous.
What are the Advantages and Disadvantages of Having a Diagnosis?
The advantage to the child of having a diagnosis is not
only in preventing or reducing the effects of some compensatory
or adjustment strategies, but also to remove worries about
other diagnoses, such as being insane, and to be recognized
as having genuine difficulties coping with experiences that
others find easy and enjoyable. The child with Asperger's
syndrome has no physical characteristics to indicate that
they are different, and having intellectual ability may
lead others to have high expectations with regard to social
knowledge. Once the diagnosis is confirmed and understood,
there can be a significant positive change in other people's
expectations, acceptance and support. There should be compliments
rather than criticism with regard to social competence,
and acknowledgement of the child's confusion and exhaustion
from learning two curricula at school, the academic curriculum
and the social curriculum.
The advantage of acknowledging and understanding the diagnosis
for parents is that, at last, they have an explanation for
their son's or daughter's unusual behaviors and abilities,
and knowledge that the condition is not caused by faulty
parenting. The family may then have access to knowledge
on Asperger's syndrome from literature and the Internet,
resources from government agencies and support groups, as
well as access to programs to improve social inclusion and
emotion management that will greatly benefit the whole family.
There may also be greater acceptance of the child within
the extended family and family friends. The parents can
now provide an acceptable explanation to other people regarding
the child's unusual behavior.
Siblings may have known for some time that their brother
or sister is unusual and
may have been either compassionate, tolerant and concerned
about any difficulties, or embarrassed, intolerant and antagonistic.
Each sibling will make his or her own accommodations towards
the sibling with Asperger's syndrome. Parents can now explain
to their children why their brother or sister is unusual,
and how the family has had to, and will need to, adjust
and work cooperatively and constructively to implement the
remedial strategies. Parents and professionals can provide
the siblings with age appropriate explanations about their
brother or sister, to give their friends, without jeopardizing
their own social networks. Siblings will also need
to know how to help their brother or sister at home when
friends visit, and be made aware of their role and responsibilities
at school and in the neighborhood.
The advantages for school services, especially teachers,
is that the child's unusual behavior and profile of social,
cognitive, linguistic and motor skills are recognized as
a legitimate disorder that should provide access to resources
to help the teacher. Confirmation of the diagnosis should
also have a positive effect on the attitudes of other children
in the classroom and other staff who have contact with the
child. The teacher can access information from textbooks
and resource programs specifically developed for teachers
of children with Asperger's syndrome. The teacher can also
explain to other children and staff who teach or supervise
the child, why he or she behaves and thinks in a different
way.
The advantages of the diagnosis for the adolescent or adult
with Asperger's
syndrome can be in terms of support while a student at college
or University or in
employment (Fast 2004; Harpur, Lawlor and Fitzgerald 2004;
Hawkins 2004; Meyer 2001). Acknowledgement of the diagnosis
can lead to greater self-understanding and better decision-making
with regard to careers, friendships and relationships. The
adult may benefit from joining an adult support group that
has local meetings, or an Internet support group or chat
room. This can provide a sense of belonging to a distinct
and valued culture and to enable the person to consult members
of the culture for advice. We also know that acceptance
of the diagnosis can be an important stage in the development
of successful adult relationships with a partner, and invaluable
when seeking counseling and therapy from relationship counselors
(Aston 2003).
The author has noted that when an adult is diagnosed with
Asperger's syndrome
there can be a range of emotional reactions. Most adults
report that having the
diagnosis has been an extremely positive experience (Gresley
2000). There can be intense relief: `I am not going mad';
joy at ending a nomadic wandering from
specialist to specialist, at last discovering why they feel
and think differently to
others; and excitement as to how their lives may now change
for the better. There can also be moments of anger at the
delay in being diagnosed and at `The System' for not recognizing
the signs for so many years. There can be feelings
of despair regarding how their lives would have been much
easier if the diagnosis had been confirmed decades ago.
Other emotional reactions can be a sense of grief for all
the suffering in trying to be as socially successful as
others, and the years of feeling misunderstood, inadequate
and rejected.
There can be a new sense of personal validation and optimism,
at last not feeling
stupid, defective or insane. As Liane Holliday Willey said
exuberantly on learning of her diagnosis, `That's why I'm
different; I'm not a freak or mad'. There can be the benefits
in terms of self-esteem and moral support in identifying
with other adults with Asperger's syndrome by using the
Internet and support groups specifically for and organized
by adults with Asperger's syndrome. The group meetings can
initially be organized by a local parent support group or
by disability support staff at a large University or college
that has several students registered with Asperger's syndrome
(Harpur, Lawlor and Fitzgerald 2004). Some support groups
have formed spontaneously in large cities as occurred in
Los Angeles when Jerry Newport, a man with Asperger's syndrome,
formed and coordinated the support group Agua. There can
be an affinity, empathy and support network with fellow
members of the same `tribe' or clan who share the same experiences,
thinking and perception of the world. Rebecca Everhart has
Asperger's syndrome and in her play `Aspie' writes: I am
what you might call one of the idiosyncratic members of
society. I am one of the unforgiven. I have been referred
to as a space cadet or freak. Or, depending on your generation,
a nerd, a geek, or spaz or a dweeb. But what's in a name?
I am an Aspie. Of all the names I have been called in my
lifetime, I like Aspie the best because it means that I
am in good company.
When talking to adults with Asperger's syndrome, the author
often refers to the self- affirmation pledge of those with
Asperger's syndrome written by Liane Holliday Willey (Willey
2001, p.164).
· I am not defective.
I am different.
· I will not sacrifice
my self-worth for peer acceptance.
· I am a good and interesting
person.
· I will take pride in
myself.
· I am capable of getting
along with society.
· I will ask for help
when I need it.
· I am a person who is
worthy of others' respect and acceptance.
· I will find a career
interest that is well suited to my abilities and interests.
· I will be patient with
those who need time to understand me.
· I am never going to
give up on myself.
· I will accept myself
for who I am.
The last pledge, `I will accept myself for who I am' is
considered by the author as a major goal when conducting
psychotherapy with an adolescent or adult with
Asperger's syndrome.
One reaction, although rare, is for some people to deny
that they have Asperger's syndrome, insisting that there
is nothing wrong with or different about them. Despite acknowledging
that the clinical descriptions match their developmental
history and profile of abilities, they may question the
validity of the syndrome and reject any programs or services.
However, this may only be an initial reaction and given
time to reflect, they may eventually accept that their personality
and profile of abilities includes the characteristics of
Asperger's syndrome, and that this is invaluable information
when making major decisions in aspects of life such as employment
and relationships.
There could be disadvantages in having a diagnosis in terms
of how the person and others perceive the characteristics.
If the diagnostic news is broadcast widely, there will inevitably
be some children or adults who misuse this disclosure to
torment and despise the person with Asperger's syndrome.
Care must be taken when using the diagnostic term Asperger's
syndrome as some children may consider the condition is
infectious (or tease the child that it is), or corrupt the
term in a variety of ways
-Asparagus
syndrome, Sparrow syndrome, Hamburger syndrome or Arseburger
syndrome, among others. Children can be quite inventive
in stigmatizing differences but more compassionate people
may be able to repair some of the damage to the self-esteem
of someone with Asperger's syndrome who has been ridiculed
for being different.
One of the concerns of adults with Asperger's syndrome is
whether they should
include reference to the diagnosis on a job application.
If there is considerable
competition for a particular vacancy, an applicant having
a diagnosis that is unknown to the employer might lead to
the application being rejected. A potential solution is
for the adult to write a brief, perhaps one page, description
of Asperger's syndrome and the qualities and difficulties
that would be relevant to the job. This personalized brochure
could also be used to explain Asperger's syndrome to colleagues,
juniors and line managers. A shorter version can be reduced
to a business card that can be given to anyone who needs
to know about the person's diagnosis.
Having a diagnosis of Asperger's syndrome could limit the
expectations of others,
who may assume that the person will never be able to achieve
as well as his or her peers with regard to social, academic
and personal success. The diagnosis should facilitate realistic
expectations but not dictate the upper limits of ability.
The author has known adults with Asperger's syndrome whose
successful careers have ranged from professor of mathematics
to social worker; and those whose ability in the area of
relationships ranges from enjoying a fulfilling but celibate
life, to having a lifelong partner and being a much loved
parent.
As a society, we need to recognize the value of having people
with Asperger's
syndrome in our multi-cultural and diverse community. In
summary, maybe we
should consider the comment from an adult with Asperger's
syndrome who
suggested to the author that perhaps Asperger's syndrome
is the next stage of
human evolution.
