AUTISM IN THE NEWS There are only two ways to live your life. One

Volume 3, Issue 3
March 2012
Inside this issue:
GPAST News
1
Autism in the News
1
Siblings of Individuals Diagnosed
with Autism
2
GPAST Transition Conference
3
Book List for Siblings of Children
with ASD
3
GPAST Facebook
3
Support Groups
4
Resources
4
There are only
The Autism Links newsletter for this
month will focus on siblings of
children with ASD, announcement
of our upcoming conference, a
sibling book list, and info on our
Facebook page. Feel free to contact
us if you would like additional
information about any of the topics
covered in this newsletter.
The Great Plains Autism Spectrum
Disorders Treatment Program
(GPAST) has been moving around
North Dakota conducting various
trainings and conferences in the
area of Autism Spectrum
Disorders.
AUTISM IN THE NEWS
though nothing is
(Health News)
a miracle. The
U.S researchers have found that
children in minority groups were
less likely to receive an early
diagnosis when compared to
white children.
miracle."
Albert Einstein
For more information on trainings or
suggestions for upcoming trainings
please complete our online training
request form at:
http://www.ndcpd.org/alinks/
or contact: Angie Richter at
1-800-233-1737 x3506
[email protected]
Minority Kids Diagnosed with Autism Later
your life. One is as
everything is a
We are also conducting educator
trainings for districts that are
interested in ASD specific
information. We were in Bismarck at
Pride Manchester and in Standing
Rock on March 7th for staff training.
We will also be presenting in
Lignite on March 12th and in
Bottineau on March 26th. If you are
interested in hosting a training in your
area, please contact Angie Richter at
1-800-233-1737 X 3206 or
[email protected]
second one scheduled on May 10th
in Minot. There will be additional
clinics in Minot and Jamestown in
the future. If you are interested in
taking part in a clinic, contact
Connie Irey at
1-800-233-1737 x 3286 or
[email protected]
Hilory Liccini will be presenting and
attending the Pacific Rim
In an effort to train diagnostic
International Conference on
teams around the state, GPAST is in Disability and Diversity March 26 and
the process of training a clinical
27th in Honolulu Hawaii.
diagnostic team in Valley City. Our
Sarah Carr’s research project “Views
final step in the process is a consult
of Autism: A Survey of Rural Health
clinic. We are looking at completing
Providers" has been selected to be
View our website at :
the clinic in April or May. It is a goal
presented as a poster session at the www.ndcpd.org/alinks
of ours to train teams throughout
National Rural Health Association’s
the state to hold autism diagnostic
35th Annual Conference in Denver,
clinics in each of their areas. If you
Colorado in April.
are interested in getting a team
together in your area, please
GPIC is pleased to fund two upcoming
contact Angie Richter at
clinics. There is one scheduled for
1-800-233-1737 x 3206 or
April 10th in Jamestown and a
two ways to live
other is as though
[email protected]
The work of Dr. Rebecca Landa
at Baltimore’s Kennedy Krieger
Institute is beginning to investigate why and raise awareness of
the warning signs so more
parents know they can seek help.
Cultural differences in how
parents view developmental
milestones and how they interact
with their doctors, may play a role
in a later diagnosis.
White children may be diagnosed
with autism as much as a year
and a half earlier than black and
other minority children.
What Dr. Landa also found to be
troubling was that when detected,
minority children had more severe
symptoms than their white
counterparts. Minority toddlers
have more language, communication and gross motor delays than
white toddlers.
By addressing differences we can
work to help improve awareness
and service to minority children.
The study was published in the
Journal of Autism and
Developmental Disorders.
News information resources:
http:www.upi.com/Health_News/2012/02/29/
Minotrity-kids-diagnosed-with-autism-later/UPI37101330499283/
We want to hear from MORE of you!
I have received a couple individuals’ feelings and views about the proposed changes to the definition of
ASD, but we would like to hear from more voices. We plan to compile your opinions and thoughts and
share with readers in next month’s newsletter. We will not identify you. Email or call us with your opinion!
Page 2
AUTISM LINKS
By: Sarah Carr, MS
Having a child with a developmental disability in a family affects the entire system. This is especially true with a child
diagnosed with an Autism Spectrum Disorder (ASD). Autism’s core features; impaired social interaction, impaired communication,
and restricted interests and/or repetitive behaviors are a major source of stress for parents i. Parental stress does not remain in a
vacuum and that stress inevitable will threaten the entire family. Yet, in most cases, intervention and support are focused upon the
child with the disability and the parents. This excludes part of the family – the siblings.
More and more studies are examining the impact that a child with ASD in the family has upon other children within the
family. These studies have found that multiple challenges are experienced by siblings including worry about their brother or sister,
emotional and behavioral difficulties, worry about their parents, assuming a parent type role, taking on adult responsibilities,
receiving less parental attention, feelings of resentment and embarrassment, and difficulty with peer relationships ii. Marital stress
also plays a role in the quality of sibling relationships. When marital stress is greater children with typical development reported less
satisfaction with their relationship with their sibling with autism iii.
The study by Barr & McLeod (2010) puts voices to three areas of concern of the siblings: 1) Interactions with strangers, 2)
Interactions with peers, 3) Interactions with family.
“I hate being stared at. I hate my sister being stared at. Why can’t people accept
difference? When you are little you get told that they have the problem, not you, and that
they are immature. But when you are the one with the hurt feelings, how is it them who
has the problem?”
“Every time I invite someone over to my house they ask “Is your brother going to be
there?” and I say yes and they say “Oh, I don’t want to go anymore””
“When I was a still a young kid, I spent a lonely childhood, playing with imaginary friends
in my bedroom. My parents found it hard to find time for me, their second, forgotten child,
as taking care of my barely walking, scarcely talking brother was a full time job.”
However, there are also positive aspects to these sibling relationships. Siblings with typical development recognize the
challenges, but are able to find positive components of their sibling. Siblings reported they were able to have fun with and feel proud
of their sibling with ASD iv. Siblings of children with autism are inclined to view their relationships in a positive way and express
satisfaction with the relationship v. It is clear from the research that there are challenges for children who have a sibling with a
developmental disability. Therefore, siblings need a safe way to express their feelings without critical judgment or ridicule. One
possible way is through support groups. However, a study done with a rural population in West Texas found that while parents were
enthusiastic about support groups, siblings were much less interested in the concept and tended to focus more on negative aspects
of involvement vi.
Another possible way is for siblings to explore their thoughts and feelings through expressive writing. Expressive, narrative
writing has been shown to produce a variety of health benefits when applied to individuals who have experienced distress related to
cancer diagnosis, trauma and stress vii. Expressive writing, as an outlet of emotions for siblings of individuals with developmental
disabilities, has not been published in the literature.
Expressive writing was explored as an option in a recent research study completed at the North Dakota Center for Persons
with Disabilities. The number of subjects who participated in the study was small, thus restricting the extent to which the results can
be applied to a larger population. Nevertheless, upon analysis of mood reports, subjects rated themselves happier after the
completion of the writing sessions and study. The exact cause for this change in mood is undetermined viii.
Researchers and clinicians should be concerned about the emotional and behavioral adjustment of siblings of individuals
who have a developmental disability, such as Autism. And continue to search out ways to ensure their needs for support are being
met.
i.
ii.
iii.
iv.
v.
vi.
vii.
viii.
Meirsschaut, Roeyers, & Warreyn, 2010
Barr & McLeod, 2010; Petalas, Hastings, Nash, Lloyd, & Dowey, 2009; Quintero & McIntyre, 2010
Rivers & Stoneman, 2003
Patalas, et al., 2009
Bagenholm & Gillberg, 1991; Kaminsky & Dewey, 2001; Rivers & Stoneman, 2003; Patalas, et al, 2009
Lock & Finstein, 2009
Zakowski, Ramati, Morton, Johnson, & Flanigan, 2004; Smyth, True, & Souto, 2001; Smyth & Helm, 2003; Baikie & Wilhelm, 2005
Carr, 2011
Volume 3, Issue 3
Page 3
We are happy to announce that GPAST will be hosting an ASD transition
conference at MSU on June 11-12. Information and brochures will be
emailed to everyone on our newsletter list by the end of March. The
conference is free, but there will be limited seating so register right
away! Three fantastic speakers will be presenting: Brian King, Taylor
Crowe, and David Crowe. Be on the lookout for the brochure and registration information at the end of this month!
BOOK LIST FOR SIBLINGS OF CHILDREN WITH ASD
Band, Eve & Hecht, Emily, Autism Through a Sister's Eyes: A young girl's view of her brother with autism.
Arlington, TX: Future Horizons, 2001. A simply told story, written in the voice of a girl who lives in the
Baltimore area.
Bleach, Fiona, Everybody Is Different. A book for young people who have brothers or sisters with autism,
for ages 8-16.
Feiges, Lynne Stern & Weiss, Mary Jane, Sibling Stories: Reflections on Life with a Brother or Sister on the
Autism Spectrum. Shawnee Mission, KS: Autism Asperger Publishing Co., 2004. Addresses important issues
about what it means to be the brother or sister of a person with autism.
Harris, Sandra L. Siblings of Children with Autism: A guide for families, Second Edition.
Bethesda, MD: Woodbine Press, 2003. Offers compassionate and authoritative advice and strategies for
dealing with specific issues that are often troublesome for siblings.
Katz, Illana & Ritvo, Edward, Joey and Sam. Northridge, CA: Real Life Storybooks, 1993. Story illustrates
similarities and differences between two brothers, one of whom has autism. For children grades K-5.
Messner, Abby Ward, Captain Tommy. Fictional story for children grades 1-4.
Meyer, Donald J., ed., Views From Our Shoes. Created to give siblings an opportunity to experience the
thoughts and feelings of other siblings who have a brother or sister with special needs. For ages 9-12.
Moore, Deborah Ann, Ethan and Phoebe: A child's book about autism. Illustrated story for ages 4-8.
Murrell, D., Tobin Learns to Make Friends. Arlington, TX: Future Horizons, 2001.
Peralta, Sarah, All About My Brother. Written by 8-year-old Sarah, sister of a nonverbal younger brother
with autism. For children ages 6-10.
Rosenberg, Marsha S., Everything You Need to Know When a Brother or Sister is autistic. For readers in
grades 5-9.
Sullivan, Connor, I Love My Brother. A picture book written by 4-year-old Connor about his 2-year-old
brother Sean, who has autism. For preschool and kindergarten children.
Thompson, M. Andy and His Yellow Frisbee. Bethesda, MD: Woodbine House, 1996. A simple description
for readers in grades K-5.
Twachtman-Cullen, Diane, Trevor, Trevor. Cromwell, CT: Starfish Press, 1998. Intended to be read by a
parent or teacher, for children ages 6-10.
http://www.bcc-asa.org/FOR%20SIBLINGS%20OF%20CHILDREN%20WITH%20AUTISM%20SPECTRUM%20DISORDERS.pdf
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We are on Facebook to deliver even more information and outreach to the state of North
Dakota. Please contact us with any ideas to make our Facebook page even
better!
NDCPD:
A University Center of Excellence
on Developmental Disabilities,
Education, Research, and Services.
It is part of a network of similar
programs at universities
throughout the United States.
Our Mission:
To provide service, education, and
research which empowers
communities to welcome, value
and support the well-being and
quality of life for people of all ages
and abilities.
Vision Statement:
People with disabilities have the
right to expect that services they
receive will appropriately promote
their independence, productivity,
integration and inclusion.
People with disabilities have the
same rights as all citizens.
People with all abilities will be
included in all aspects of life and
receive services they need.
500 University Ave West
Minot, ND 58707
701-858-3580
Toll free 800-233-1737
Fax 701-858-3483
If you would like to be on our mailing list
or receive the newsletter electronically,
please email
[email protected]
This newsletter was supported in part by the Department of
Health and Human Services/Health Resources and Services
Administration (HRSA); Grant # H1TMC19969. The views and
opinions expressed here are those of the authors and do not
necessarily represent the opinions or policy of the U.S.
Department of Health and Human Services.
Autism Support Groups in North Dakota
Williston Area Autism Support
Group: Fourth Tuesday of the month
from 5:30-7:00 at Gloria Dei
Lutheran Church, 1821 9th Ave. W,
Williston, ND Renie Chadwell
503-990-9345
Minot Area Parents Support for
Autism Spectrum Disorders
(MAPS-4-ASD): Third Tuesday of the
month 7:00-9:00 PM at Magic City
Campus 1100 11th Ave. SW, Minot,
ND(www.maps-4-asd.org) or call
Heather Wittliff 701-720-6430
Tuesday’s Child Asperger Autism
Support Group: Every Tuesday 12
noon at the SE Human Service
Center and the second Saturday of
each month from 9:00-10:30 AM at
St. Ann and Joachim Catholic
Church in Fargo
(www.rrvasperger.org)
701-566-1675
FM Autism Support Group: Second
Friday of every month from
7pm-9pm. Meets at Pediatric
Therapy Partners 2846 Brandt
Drive S, Fargo, ND. Contact Rachel
287-1184 or Karen 223-1634.
Childcare provided.
Moorhead Autism Support Group:
Second Friday of the month from
7:00-9:00 at Triumph Lutheran
Church, 2901 20th St S, Moorhead,
MN. Contact Rachel Stotts
218-287-1184 or Karen Swanson
218-233-1634
Wahpeton Area Autism Support
Group: Third Monday of the month
7:00 PM at Bethel Lutheran Church,
607 6th Street N, Wahpeton, ND.
Contact Warren/Anne Retzlaff
701-642-6733.
Families for Effective Autism
Treatment (FEAT): Second Monday
of each month at 7:00 Century
Elementary School Library. Corner
of 17th Ave. South and 34th Street,
Grand Forks, ND. Contact
Bob 775-3308/Jillian 772-4172.
PDD-NOS/Autism Support Group:
Second Tuesday of the month at
7:00-8:30. BECEP is located at 720
N. 14th Street, Bismarck, ND. Free
childcare and info call :Margaret Lo
Murray 323-4433.
ND Autism Connection: Third
Tuesday of the month 7:00 at the
River of Hope Church, 1996 43rd
Ave. NE, Bismarck, ND www.ndautismconnection.org
Talk About Curing Autism: Fourth Monday of the Month from 6:00-8:30 at
Anne Carlson Center 2860 10th Ave N, Suite 400, Grand Forks, ND.
http://groups.tacanow.org/north-dakota/index.html
The PAC (Parents of Autistic Children)-monthly meetings and trainings: Fort
Totten Special Education Unit/ Four Winds School
Contact: Hayley Ness at 701.766.1452 or [email protected]
P.O. Box 199 Fort Totten, ND 58335
Autism Spectrum Connections: P.O. Box 425 Hazen, ND 58545 Contact: Dawn
Kaiser 701-748-5285
If there is a group that is not listed and you would like to see added,
please contact Angie Richter at 701-858-3506 or email at
[email protected]
Resources:
-http:www.upi.com/Health_News/2012/02/29/Minotrity-kids-diagnosed-with-autism-later/UPI37101330499283/
-http://www.bcc-asa.org/FOR%20SIBLINGS%20OF%20CHILDREN%20WITH%20AUTISM%
20SPECTRUM%20DISORDERS.pdf