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Down Syndrome and Autism Dual Diagnosis

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 surprising way, you may be wondering if he or she is facing another challenge besides Down syndrome.

Although 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. There are other reasons that children experience conditions that change their behavior, delay development, or affect previously acquired skills and milestones. These include sensory integration challenges, trauma-related events, illness, abuse, allergies, endocrinological difficulties, and undiagnosed seizures.

Resources and support have been available for many years for families whose children with Down syndrome do have an autistic spectrum disorder, but families may find that only a few in the medical community have investigated resources available to them. Concerned medical professionals and dedicated parents have developed these resources and made them available to answer some of your questions and share with your child's medical providers, educators, and local support groups. 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, and other online support and information sites.

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 online discussion groups sharing information and support.

Browse at local bookstores, public libraries and online retailers for books about children, teens and adults with autism, like When Down Syndrome and Autism Intersect: A Guide to DS-ASD for Parents and Professionals and Literacy Skill Development for Students with Special Learning Needs.

Autism in Children with Down Syndrome
http://www.iancommunity.org/cs/related_disorders/autism_and_down_syndrome

Autism Spectrum Disorder And Sensory Integration - A Closer Look
http://www.autismunited.org/blog/autism-spectrum-disorder-and-sensory-integration-801062.html

April 2013: DS/ASD as I know it: An Interview with Joan Medlen (Part 1) | Talk|Down syndrome
http://talk-ds.org/2013/04/16/dsasd-as-i-know-it-an-interview-with-joan-medlen-part-1/

Down syndrome Awareness: My Sister Emily!
YouTube video
http://tinyurl.com/766cd2u
How she is known by her sisters, not her dual diagnosis of Down syndrome and autism.

Here is a website I discovered thanks to the Adult Down Syndrome Clinic FB page:
The Down Syndrome-Autism Connection
http://ds-asd-connection.org
Behaviors to Notice
(Your child with Down syndrome may have autism if ... one or
two of these behaviors become predictable, extreme, or resistant to change
http://ds-asd-connection.org/About_DS-ASD.html
Resources
http://ds-asd-connection.org/DSASD_Resources.html
Autism Symptoms in Toddlers with Down Syndrome: A Descriptive Study
More than Down Syndrome: A Parent's View
JFK Partners Fact Sheet
Bella Online: Down Syndrome and Autism Dual Diagnosis
Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know
Diagnosis of Autism in Children with Down Syndrome

New Findings Validate the Accuracy of Autism Diagnosis In Children with Down Syndrome
http://www.newswise.com/articles/new-findings-validate-the-accuracy-of-autism-diagnosis-in-children-with-down-syndrome

Stories of families raising children with a dual diagnosis of Autism and Downsyndrome
http://downsyndrome.about.com/od/downsyndromedevelopment/fl/Stories-of-Families-Down-Syndrome-and-Autism-DS-ASD.htm
http://buff.ly/1hZEst2

Breakthroughs in Diagnosing, One Day Preventing Autism
Diagnosing Autism in Those With Down Syndrome

http://blogs.edweek.org/edweek/speced/2011/10/breakthroughs_in_diagnosing_pr.html

UK - Down's Syndrome Association DSA - 2009
Dual Diagnosis Down's syndrome/Autism Spectrum Disorder (DS/ASD)
http://www.downs-syndrome.org.uk/information/my-child/ds-asd.html

ds-autism listserv
http://groups.yahoo.com/group/ds-autism

Down Syndrome - Autism Connection on Facebook:
https://www.facebook.com/pages/The-Down-Syndrome-Autism-Connection/257039447057
Private Group
https://www.facebook.com/groups/ds.asd.connection.support/

Three of the excellent articles on Dual Diagnosis from the Disability Solutions newsletter are available at the Kennedy Krieger Institute web site:

Disability Solutions - Special Issue Articles on Down Syndrome and Autistic Spectrum Disorder
http://www.kennedykrieger.org/patient-care/outpatient-programs/disability_solutions_articles

Dual Diagnoses: the Importance of Diagnosis and Treatment by Bonnie Patterson, M.D
http://www.kennedykrieger.org/kki_misc.jsp?pid=2142&bl=1

More than Down Syndrome: A Parents View by Joan E. Guthrie Medlen
http://www.kennedykrieger.org/kki_misc.jsp?pid=2140

Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know by George T. Capone M.D.
http://www.kennedykrieger.org/kki_misc.jsp?pid=2141&bl=1

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.riverbendds.org/autism.html

East to Love But Hard to Raise:
No One Brings a Casserole
http://www.easytolovebut.com/?p=3054

The Importance of Treatment for a Dual Diagnosis Down Syndrome and Autism
http://ow.ly/zqmIN

Autism Wonderland:
When a Special Needs Mother Needs Help
http://www.parents.com/blogs/to-the-max/2013/09/09/autism/when-a-special-needs-mother-needs-help/

My Son Was Autistic. Is He Still? by Jayne Lytel - Washington Post

Floortime and DIR Model Techniques
http://www.bellaonline.com/articles/art56206.asp

Encouraging Late Talking Children
http://www.bellaonline.com/articles/art55867.asp

Severe Communication Impairment Associated with Down Syndrome
http://www.annemcdonaldcentre.org.au/down-syndrome -
Rosemary Crossley and Rosemary Ryall
A paper presented at the World Down Syndrome
Congress 2000 in Sydney

Language & Communication: The Key is Effectiveness
Kennedy Krieger Institute
http://www.kennedykrieger.org/patient-care/outpatient-programs/language_communication_down_syndrome_asd
http://tinyurl.com/a29f9vn

Researchers find that teachers (and parents) talk too fast for young children
http://www.wichita.edu/thisis/wsunews/news/?nid=307

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