&linkCodeAlthough there is a great deal of attention being directed at autism, mostly through the efforts of the growing numbers of families affected by this diagnosis, there is little mention about the growing number of children with a dual diagnosis in families whose children were born with Down syndrome.
If you are the mom of a beautiful child with Down syndrome who does not seem to be developing like other children with DS that you have met, who stops developing in what you expected to be a natural progression, or whose development turns around or changes in an alarming way, you may be wondering if he or she is facing another challenge besides Down syndrome.
Resources and support are available for families whose children with Down syndrome do have an autistic spectrum disorder in addition to garden variety DS. Concerned medical professionals and parents just like you have developed these resources and are available to answer some of your questions and share your concerns. I will list a few of these below.
Although no one wants to hear that their loved one faces greater challenges, it is important that a child with a dual diagnosis has the greatest opportunity for accommodations and support, and that families learn how to best support and encourage their children as they grow.
Know that you are not alone, as you will discover when you investigate the resources below, that include Disability Solutions newsletter, the Kennedy Kreiger Institute, online support and information sites.
Disability Solutions
Articles in volume three, issues five and six, of the Down Syndrome newsletter Disability Solutions include the moving and informative, "More Than Down Syndrome: A Parent's View" by editor Joan E Guthrie Medlen; "Dual Diagnosis: The Importance of Diagnosis and Treatment" by Bonnie Patterson, M.D.; "Sensory Integration: Clinic Observations of Children with Down Syndrome & Autistic Spectrum Disorder" by Mary Lashno, OTR; "Changing Behaviors and Teaching New Skills" by Naomi Swiezy, Ph. D.; "Language and Communication: The Key is Effectiveness" by Julie Bierman Gee, M.S., CC-SLP; "Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know" by the director of the DS Clinic at Baltimore's Kennedy Krieger Institute George T Capone, M.D.; "Gross Motor Development in Children With Down Syndrome & Autistic Spectrum Disorders: Clinic Observations" by Patricia C. Winders, PT.
http://www.disabilitysolutions.org
Down Syndrome & Autistic Spectrum Disorder - PDF
Disability Solutions, Volume 3, Issues 5 & 6:
http://www.disabilitysolutions.org/news.htm
A list of these articles is also available at KKI's web site,
http://www.kennedykrieger.org/kki_misc.jsp?pid=2142
Families raising children with the dual diagnosis, or who suspect their son or daughter with Down syndrome might have an autism spectrum disorder are invited to participate in an online discussion group for sharing information and support.
ds-autism listserv
http://www.onelist.com/subscribe/ds-autism
Joan@disabilitysolutions.org
Behavioral symptoms, social and communication anomalies, a checklist of behaviors that are not normally seen in children with DS without autism, issues in diagnosis, and references can be found in a 1998 article by Glenn Vatter "Diagnosis of Autism in Children With Down Syndrome" on the Riverbend DS Group website at http://www.altonweb.com/cs/downsyndrome/autism.html
Warning: In November 2007 an alert was sent out warning parents whose children use weighted blankets or vests to have them tested for possible lead contamination.
Communication, Autism, and Developmental Disabilities
http://www.bellaonline.com/articles/art49475.asp
Down Syndrome and Autism Dual Diagnosis
http://www.bellaonline.com/articles/art33178.asp
Autism Spectrum Disorders
http://www.bellaonline.com/articles/art3137.asp
Autism Spectrum - Adolescent Issues and Privacy
http://www.bellaonline.com/articles/art46211.asp
Browse at Amazon.com for books on Understanding Autism
Literacy Skill Development for Students with Special Learning Needs - A Strength Based Approach
Understanding the Nature of Autism - Travis Thompson
Pivotal Response Treatments for Autism - Communication, Social, and Academic Development
Teaching Children with Autism Strategies for Initiating Positive Interactions and Improving Learning Opportunities
Positive Behavioral Support - Including People with Difficult Behavior in the Community
Learning to Listen - Positive Approaches and People with Difficult Behavior
Communication-Based Intervention for Problem Behavior - A User's Guide for Producing Positive Change
"You're Going to Love this Kid!" Teaching Students with Autism in the Inclusive Classroom
Beyond the Autism Diagnosis - Helping Families
Quick-Guides to Inclusion Ideas for Educating Students with Disabilities - Second Edition 2007
Strong Start - Grades K-2 Social and Emotional Learning Curriculum - 2007
Sexuality - Your Sons and Daughters with Intellectual Disabilities
What's new in research into autism?
Cincinnati Children's Hospital Medical Center study identifies involvement of chromosome 21 in developmental regression autism reported in the journal of Molecular Psychiatry
Autism research at the University of Missouri
University of Missouri researchers led by Dr. Judith Miles, professor of child health genetics, and Nicole Takahashi, senior research specialist, recently announced that the diagnosis of autism could be divided into two subgroups, essential autism and complex autism. Thirty percent of the children studied having complex autism had genetic differences, were more prone to seizures, lower IQs and structural anomalies in the brain than individuals with the essential type.
Down Syndrome Clinic at the University of Missouri
Oprah - April 2007 - Faces of Autism
http://www.oprah.com/tows/pastshows/200704/tows_past_20070405.jhtml
Although it may be difficult to find autism organizations with special groups for parents of children with the dual diagnosis, general resources on autism spectrum disorders may be helpful and can be found at the Family Village web page on Autism at http://www.familyvillage.wisc.edu/lib_autm.htm
including The Autism Society of America at http://www.autism-society.org
Autism Spectrum Disorders Research at the National Institute of Mental Health
Infant Siblings Studies Lead to Major Advance in Earlier Diagnosis for Autism Spectrum Disorders - - the Baby Sibs Study
Center for Autism and Related Disorders and Cure Autism Now
Autism Information at BellaOnline.com
Autism Spectrum Disorders - Special Needs Children
http://www.bellaonline.com/articles/art3137.asp
Autism Spectrum - Adolescent Issues and Privacy
http://www.bellaonline.com/articles/art46211.asp
Autism, Nutrition and Special Diets
http://www.bellaonline.com/articles/art49724.asp
How Uncomfortable is Your Child?
http://www.bellaonline.com/articles/art960.asp
What is it like when your child is diagnosed - does a mother's 'citizenship' shift again?
New Mother - Newly Diagnosed Child
http://www.bellaonline.com/articles/art33557.asp
Autism Spectrum Disorders at BellaOnline.com
http://www.autismspectrumdisorders.bellaonline.com
Twins and Autism Spectrum Disorders
by BellaOnline Twins Editor Kris Bigalk
http://www.bellaonline.com/articles/art22966.asp
We welcome discussion of any of these topics at the SNC forum at Our Forum Bulletin Boards for families raising children with special needs
Books on Autism Spectrum Disorders - Amazon.com
Teaching by Social Stories
Attainment Company - All About Autism DVD set
CoTeaching Students with Autism in the Regular Education Classroom
Sensory Critters - Fidget Toys and Sensory Tubs
Sensory Critters - What is Autism
Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality



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