What We Know
Throughout history, Down syndrome has been the most commonly occurring genetic condition. Also known as Trisomy 21, an individual with Down syndrome has three copies of chromosome #21 (rather than the typical two copies). The resulting extra genetic material causes delays in the way a person develops, both physically and intellectually. One in every 691 babies is born with Down syndrome every year in United States.
Autism is a disorder that affects the brain’s normal development of social and communication skills. The CDC states that one in every 68 children in the general population is on the autism spectrum.
What happens when a person has BOTH Down syndrome and autism spectrum disorder (DS-ASD)?
Down syndrome and autism are both equal opportunity conditions– meaning that anyone, anywhere, regardless of race, creed or socio-economic status, can have a child with either condition. It is believed that up to 18%1(some research suggests up to 39%2) of individuals with Down syndrome also have autism spectrum disorder. Both Down syndrome and autism can be challenging disabilities separately, without the combination, however when combined the challenges are multiplied and can be quite complex.
Our goal is to ensure that families, teachers and healthcare providers receive the education and support they need – with the ultimate goal being that children and adults living with DS-ASD will receive the understanding, education, medical care and opportunities they so greatly deserve.
Children and adults living with co-occurring Down syndrome and autism spectrum disorder (DS-ASD) are an under-served and often misunderstood population.
Parents often know in their hearts that something is amiss, but may be unaware that there may actually be a diagnosis to help them understand their child better. They may feel totally alone and overwhelmed as they observe other children with Down syndrome growing and developing according to expectations while their child exhibits behaviors more typically associated with autism - such as lack of communication, little eye contact, solitary play, fixation on objects, flapping or other repetitive behaviors, sleep problems, etc.
Educators may become frustrated and overwhelmed without the tools and resources they need to ensure the success of their students with DS-ASD.
Healthcare providers may be reluctant to suggest a second diagnosis or may even be unaware that the two conditions can co-occur. If diagnosis is delayed, children may miss out on proven educational strategies such as early intervention and supplemental therapies. Early diagnosis and treatment are crucial, however it is never too late to seek an evaluation.
At the Down Syndrome-Autism Connection™, we aim to dispel myths and misconceptions by providing education and support, and working collaboratively to find real solutions to every day challenges. We want every person caring for a child or adult with DS-ASD to know that they are not alone. There is help and there is hope.
Benefits of Knowing
Many parents have expressed that once their child received the additional diagnosis of autism, it became the most important issue. A lot of parents and professionals will tell you that the autism almost always "trumps" the Down syndrome, with difficult behaviors and educational challenges being the main issues in their lives.
A formal diagnosis could:
Behaviors to Notice
Your child with Down syndrome may have autism if he or she:
These are just a few of the behavioral red flags that we see.
Please note that many of these behaviors are normal for children with Down syndrome at certain points of development. Also, a child with Down syndrome may experience relatively normal development but then regress by developing these behaviors between the ages of three and seven. When one or two of these behaviors become predictable, extreme, or resistant to change, your child may benefit from a thorough evaluation for autism spectrum disorder performed by a professional who is experienced in working with children with Down syndrome.
1. JFK Partners, University of Colorado Denver, http://jfkpartners.org.
2. When Down Syndrome and Autism Intersect, A Guide to DS-ASD for Parents and Professionals, P.1, Woodbine House, 2013, http://woodbinehouse.com.
"My husband and I were both a little perturbed at the fact that Sadie had been in close contact with a ton of professionals. She wasn’t progressing in therapies. Some even witnessed her regression in skills. Yet, no one hinted at autism. However, once we told (them) of her new diagnosis, they all were a little relieved themselves and even started doing some of the autism approach therapies to which she responded positively.”
“The last thing I wanted was another label or diagnosis for my precious girl, but when it was determined that autism was definitely part of my daughter’s challenges, I felt validated. I love my daughter and I want to do what’s best for her, so it was worth pushing for answers. I was also quite relieved that she would start receiving the understanding, services and attention that she deserves.”
The Down Syndrome-Autism Connection™ presents "DS-ASD 101" workshops at the National Down Syndrome Congress' Annual Convention each year. On a limited basis, we have also been able to bring our presentation to Down syndrome groups around the country. If you would like to know more about the possibility of bringing our educational program to your town, please contact us.
LOOKING FOR RESOURCES FOR AN AUTISM EVALUATION FOR YOUR LOVED ONE/CLIENT/STUDENT WITH DOWN SYNDROME?
Many parents and professionals have reported that they have encountered barriers when seeking an autism evaluation. Perhaps they are met with resistance to the idea, or others mistakenly believe that concerns can be answered by the Down syndrome alone. (This is called diagnostic over-shadowing.)
If you feel an evaluation is in order, observe closely, take notes, and arm yourself with current information. Some parents have been persistent and in time they finally get the answers to their questions. When seeking an evaluation, be sure to ask if the provider has experience with evaluating autism in a person/child with Down syndrome. Many families seek an appointment with an AUCD center, a developmental pediatrician, or Down syndrome clinic -- and others have been able to obtain an educational diagnosis of autism from their school system.
The Association of University Centers on Disabilities (AUCD) may be a great place to start.
If you'd like to search for Children's Hospitals in your area, consult the Children's Hospital Association's directory.
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for the Journey