General Questions
What are you studying in the Twin
Autism Project?
Why study twins?
How do twin studies help families
without twins?
How did TAP get started?
My twins are nothing alike, but the
doctor said they are identical. How can that be?
Autism Questions
Only one of my twins has received
a diagnosis on the autism spectrum. Can we still
participate?
One/both of my twins are non-verbal
or have very little speech. Can we still participate?
Our pediatrician/school suspects
one/both of my twins is on the autism spectrum,
but has not given a formal diagnosis. Should I contact
your project about participating now, or should
I wait until he/she is evaluated?
My twins have a sibling with an autism
spectrum diagnosis. Would you like the twins' sibling
to participate, too?
My twins have behavioral or emotion
regulation difficulties. Can we still participate?
One/both of my twins has a diagnosis
of Asperger's syndrome or Pervasive Developmental
Disorder, Not Otherwise Specified (PDD-NOS). Do
you still want us to participate?
General Participation Questions
How many twins have been involved
in your study?
How old are the twins in your project?
Do you share phone numbers with
other organizations or companies?
Can families with twins who do not
live in Wisconsin still participate?
Can triplets or other multiples
participate in your project?
My twins are fraternal. Do you still
want us to participate?
If we participate now, do we have
to participate again later?
What happens after we participate?
Will I get individual results about
my twins?
Home Visit Questions
How long is the phone interview?
How many families have completed
the phone interview?
We are really busy. Do you do interviews
in the evening?
Home Visit Questions
How many families do you visit?
Who will be coming to my house?
Can we schedule home visits on weekends?
Why are you interested in getting
information about parents and siblings?
What will you do with the DNA samples?
On the consent form, what is the
difference between the two DNA options?
My twins are pretty (shy/outgoing/loud/quiet);
I am not sure how the visit will go.
Will my twins be able to take a
break during the visit?
Will I be able to watch my twins
during the visit?
How are the saliva samples used?
Is videotaping the home visit necessary?
Top
General Questions
Q:
What are you studying in the Twin
Autism Project?
A: The Twin Autism Project (TAP) is a population-based
twin study of autism spectrum disorder. This means
we are interested in enrolling all twin pairs that
were born in Wisconsin or are currently living in
Wisconsin, where one or both twins have an autism
spectrum diagnosis. The goal of the study is to learn
more about the genetic factors in autism by comparing
similarities and differences in identical and fraternal
twin pairs.
Q:
Why study twins?
A: Studying twins allows
us to identify both genetic and environmental influences
on autism spectrum disorder. Identical twins share
100% of their genes and fraternal twins share, on
average, 50% of their genes. We can look at behavior
relationships between twin pairs and estimate the
heritability of a certain trait or behavior. For example,
if identical twins are more similar than fraternal
twins on a given trait, we estimate that there is
a stronger genetic influence on that trait. Twin methodology
provides us with sophisticated analysis of genetic,
environmental, and interaction effects on child development
and related risk and protective factors.
Q:
How do twin studies help families
without twins?
A: One of the assumptions
of twin studies is that twins are similar to other
children, except that they share a birthday with a
sibling the same age as them. Findings from twin studies
are useful for understanding the development of all
children. Your participation helps, as our findings
educate all kinds of people who work with children.
Some of those who benefit include teachers and educators,
doctors, other childcare workers, those who form early
intervention programs, and researchers.
Q:
How did TAP get started?
A: TAP began in 2004 under
the direction of Dr. Hill Goldsmith and Dr. Morton
Ann Gernsbacher. They began the project when it was
clear that the few existing twin studies of autism
had been done many years ago using outdated diagnostic
criteria. They set out to update the autism literature
with a systematic study of twins and autism, using
current diagnostic criteria. They are supported by
full-time staff, graduate students, and approximately
15 undergraduate students who collect, code and analyze
data for the project.
Q:
My twins are nothing alike, but
the doctor said they are identical. How can that be?
A: When someone says twins
are identical, they mean "genetically identical",
not necessarily physically or emotionally identical.
Oftentimes twins can share 100% of their genes and
still have different likes and dislikes, or behave
in different ways. This is because not everything
is due to genetic influence. The environment is also
very important in shaping many things about a person's
likes, dislikes, talents, and behaviors.
Top
Autism Questions
Q:
Only one of my twins has received a diagnosis
on the autism spectrum. Can we still participate?
A: Yes! TAP studies the similarities
and differences in twins on the autism spectrum, including
twin pairs where only one twin has a diagnosis and
where both twins have a diagnosis.
Q:
One/both of my twins are non-verbal or have
very little speech. Can we still participate?
A: Yes! We tailor each of our
activities to the twins' verbal abilities and many
are specifically designed such that speech is not
required.
Q:
Our pediatrician/school suspects one/both of
my twins is on the autism spectrum, but has not given
a formal diagnosis. Should I contact your project
about participating now, or should I wait until he/she
is evaluated?
A: Please contact us now. Families
are enrolled in the project with formal or speculated
diagnoses. However, it would be very helpful if you
updated us with further information if you are in
the process of evaluation or receiving a diagnosis.
Q:
My twins have a sibling with an autism spectrum
diagnosis. Would you like the twins' sibling to participate,
too?
A: Siblings with an autism spectrum
diagnosis do not participate in home visit activities.
However, we do ask parents to fill out questionnaires
about all siblings who reside in the home, regardless
of diagnosis.
Q: My twins have behavioral or
emotion regulation difficulties. Can we still participate?
A: Yes! We do visits with all types of twins.
We tailor each of our activities to the twins' abilities
and interests, and the twins have a lot of fun participating
in the activities and interacting with our home visit
team leaders. Our visits are also very flexible
and if a child gets frustrated or upset during the
visit, we can take breaks or stop an activity.
Q:
One/both of my twins has a
diagnosis of Asperger's syndrome or Pervasive Developmental
Disorder, Not Otherwise Specified (PDD-NOS). Do you
still want us to participate?
A: Yes! TAP studies formal or speculated autism
spectrum diagnoses including autism, Asperger's syndrome
and Pervasive Developmental Disorder, Not Otherwise
Specified (PDD-NOS).
Top
General Participation Questions
Q: How many twins have been involved
in your study?
A: We estimate that there are at least 150 twin
pairs in Wisconsin where one or both twins qualify
for a diagnosis on the autism spectrum. As of December
2007, TAP has enrolled over 75 families.
Q: How old are the twins in your
project?
A: TAP is collecting data from all twin pairs
aged 2-21 years in the state of Wisconsin where one
or both twins qualify for a diagnosis on the autism
spectrum.
Q: Do you share phone numbers
with other organizations or companies?
A: No. All of the information we receive is strictly
confidential. We do not share it with anyone.
Q: Can families with twins who
do not live in Wisconsin still participate?
A: We are interested in enrolling all twin pairs
that were born in Wisconsin or are currently living
in Wisconsin, where one or both twins have an autism
spectrum diagnosis. Families who live out of state
can participate only if they gave birth to their twins
in Wisconsin. Families who currently live in Wisconsin
can participate in our project, even if their twins
were born out of state.
Q: Can triplets or other multiples
participate in your project?
A: Yes! TAP is also interested in enrolling triplets
and other multiple births with at least one child
with a formal or speculated autism spectrum diagnosis.
Q: My twins are fraternal. Do
you still want us to participate?
A: Yes! We include all types of twins in our
studies. It is important for us to be able to compare
both identical and fraternal twins to understand the
heritability of autism spectrum diagnoses.
Q: If we participate now, do
we have to participate again later?
A: No. Your participation in each part of the
study is entirely voluntary. Families sign separate
consent forms for each phase of the project, so you
may end your participation at any time.
Q: What happens after we participate?
A: Our research is ongoing, so we will use your
confidential family identification number to add your
survey answers to our database. Most of our research
questions require a large sample of families before
data analysis may begin; however, preliminary findings
are presented at international autism research conferences.
We will also use your confidential information to
contact you about future phases of our project.
Q: Will I get individual results
about my twins?
A: No. All information is compiled together so
that we can compare group results. This provides us
with information on twins as a whole. It will take
several years before all of our data has been collected,
scored, and published. Additionally, the Institutional
Review Board, which approves studies conducted at
the university, does not allow the dissemination of
individual results. However, we can provide interested
families with copies of the video we record during
home visits.
Top
Home Visit Questions
Q: How many families have completed
the phone interview?
A: As of December 2007, we have interviewed over
75 families and continue to schedule interviews.
Q: How long is the phone interview?
A: The phone interview is an easy way to begin
participation in the study and takes approximately
one hour to complete.
Q: We are really busy. Do you
do interviews in the evening?
A: Yes! We are able to schedule interviews in
the evening or on weekends, when it is most convenient
for you.
Top
Home Visit Questions
Q: How many families do you visit?
A: As of December 2007, we have visited over
75 families and are continuing to schedule home visits.
Q: Who will be coming to my house?
A: Our research team consists of six people,
or three people for each twin. The two team leaders
who primarily interact with the twins are trained
graduate students or full-time staff. Each team leader
is accompanied by two trained undergraduate students,
who assist with the activities and videotape the visit.
We can also bring along another student to play with
young siblings of the twins.
Q: Can we schedule home visits
on weekends?
A: Yes! We are able to schedule home visits on
weekends, when it is most convenient for you.
Q: Why are you interested in
getting information about parents and siblings?
A: We are interested in your twins' development
and the best way to understand your twins' development
is to understand how they are different or similar
to other members of their family.
Q: What will you do with the
DNA samples?
A: The DNA samples will allow us to test for
genes that have been identified in the literature
as possibly related to autism. Of course, your participation
in this aspect of the study is entirely voluntary
and does not affect your participation in other phases
of the study. You may choose to be contacted before
our testing of behavior-related genes begins.
Q: On the consent form, what
is the difference between the two DNA options?
A: The first option allows us to test the twins'
samples in the future to see if they are related to
different behaviors or for other genetic similarities
or connections. The second option indicates that you
would like to be contacted for approval of further
testing before we go ahead with assessing the DNA.
Q: My twins are pretty (shy/outgoing/loud/quiet);
I am not sure how the visit will go.
A: We do visits with all types of twins. Our
experience has been very positive - kids and adolescents
enjoy the activities and interactions with our staff.
We tailor our interactions to the needs and personalities
of the twins. Some children require a much longer
warm-up time, and some children are ready to begin
the activities right away!
Q: Will my twins be able to take
a break during the visit?
A: There are plenty of times to take a break,
go to the bathroom, get a drink of water, etc. We
build breaks into the schedule and also will take
one whenever the twins need one. We allow plenty of
flexibility with our schedule so we can tailor the
visit to the needs of the twins.
Q: Will I be able to watch my
twins during the visit?
A: Yes. We realize that the twins might want
or need you to be in the room with them at different
times, so feel free to observe at all times. Sometimes
we ask parents to interact with their twins during
specific activities; however, we are interested in
getting to know the twins through their unassisted
participation. We will get to know them best if they
interact with us and participate in the games one-on-one,
without a caregiver's assistance.
Q: How are the saliva samples
used?
A: We use the saliva samples collected by families
to study a stress hormone called cortisol. Everyone
has cortisol in their saliva and the levels fluctuate
throughout the day. Cortisol levels are influenced
by factors such as sleep, time, food, health, medication,
and activity. We use the samples to examine the relationship
between cortisol levels and anxiety in autism spectrum
disorders.
Q: Is videotaping the home visit
necessary?
A: Videotaping the visits is very important for
us to be sure that we accurately record all of the
necessary information obtained in the home. We do
many activities with the twins and things move so
quickly that it can be difficult to record everything
accurately. The tapes remain confidential and only
project staff have access to the home visit videotapes.
However, if a family is very uncomfortable with the
videotaping and would be willing to participate only
without the videotaping, we would be happy to discuss
options with families for whom this is a concern.
Top
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Twin
Autism Project 
