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.
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, 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 for 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 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
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
Three of the excellent articles on Dual Diagnosis from the Disability Solutions newsletter are available at the Kennedy Krieger Institute web site:
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
As of early 2011, these articles were still available via PDF from
Disability Solutions at Disability Compass
http://www.disabilitycompass.org/publications/disability-solutions
http://www.disabilitycompass.org/publications/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.
Down Syndrome & Autistic Spectrum Disorder - PDF
Disability Solutions, Volume 3, Issues 5 & 6
http://www.disabilitycompass.org/publications/disability-solutions
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
Dr. Dennis McGuire was the keynote speaker at the
Down Syndrome-Autism Connection 2012 Conference
http://tinyurl.com/9r4z88r
Thanks, Carol V. Great resources:
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
"...DEAL Communication Centre enables people who have
no functional speech to communicate in other ways.
... One important group has been people with Down
syndrome.
All the individuals with Down syndrome seen at DEAL
have been able to make substantial gains in communication
once their speech and hand function impairments have
been carefully assessed and appropriate therapy provided
(Crossley, 1994, pp.124-7). Clients such as Michael Regos
show what can be achieved and challenge the stereotype
of Down syndrome. ..."
Language & Communication: The Key is Effectiveness
Kennedy Krieger Institute
http://tinyurl.com/a29f9vn
" ... While Sam and Catherine both have DS-ASD, they are
examples of children whose very different types of communication
intervention yielded very different results. Clearly, no two children
with Down syndrome and autistic spectrum disorder are exactly
alike, and no two approaches to therapy will be exactly the same.
All children with these diagnoses do, however, share unique speech,
language and communication needs.
http://www.kennedykrieger.org/patient-care/outpatient-programs/language_communication_down_syndrome_asd
Researchers find that teachers (and parents) talk too fast for young children
http://www.wichita.edu/thisis/wsunews/news/?nid=307
