“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.”
As many as eighteen percent (some say more) of children with Down syndrome have an autistic spectrum disorder. Many parents have expressed that once their child received the additional diagnosis of autism, it became the most important issue.
BENEFITS OF KNOWING
A formal diagnosis could:
• Help get needed school and community services that are tailored to children with autism
• Explain why a child with Down syndrome and autism develops and acts differently
• Help parents to better understand, support and guide their child
BEHAVIORS TO NOTICE
Your child with Down syndrome may have an autism spectrum disorder if he or she:
• Does not orient to people (for example, often does not respond when you call his/her name)
• Stops using speech, signs, or other means of communication
• Seems happiest playing alone
• Lacks imaginative play, prefers repetitive play with objects
• Shows more interest in objects than people
• Eats only a small selection of foods and resists new foods
• Has unusual responses to pain, sound, light, or touch
• Rarely includes other people in his/her interests
• Rarely shows interest in what other people are doing
• Has great difficulty with transitions
• Works best with established structure and routines
• Has difficulty understanding gestures like pointing
• Doesn’t seem to automatically smile back at you when you smile at him/her
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 autistic spectrum disorders performed by a professional who is experienced in working with children with Down syndrome.
The following guidelines are presented to help you use the preferred verbiage when discussing DS-ASD:
In the United States, the term Down syndrome does not have an apostrophe ('s) after the word "Down". The D is capitalized, and the s in syndrome is lower case. A shortened version is DS.
Autism Spectrum Disorders are also called autism (lower case a), or ASD.
When a child or adult has both DS and ASD, we say they have a "co-occurring" diagnosis, or "co-occurring Down syndrome and autism". While some people use the term "dual diagnosis", we prefer to use "co-occurring" because the term "dual diagnosis" can be confused with how the behavioral health industry uses the term (psychiatric diagnosis plus chemical dependency). A shortened way to say it is DS-ASD.
Person First Language is preferred for all individuals with developmental/intellectual disabilities. This simply puts the individual first and is a matter of respect, not political correctness.
A person with DS-ASD is a person first. So, "she is a child with Down syndrome and autism", or "she has DS-ASD". Outdated language would include "she's a Downs baby", or "she's autistic". (She is not a "Downs student".) She has Down syndrome or she has autism. She also has brown hair and is an artist. Her DS-ASD is just one way to describe her. And the truth is, you don't even need to mention her disability at all unless it pertains to the conversation!
Use language that preserves the person's dignity. We do not use words that conjure up pity, such as "victim of, suffers from, afflicted by". DS-ASD is not a "disease".
Disability is a natural part of the human condition. There is nothing "wrong" with someone with DS-ASD. They are who they are!
See the child or adult with DS-ASD as a unique individual. No two people are alike. Everyone has his or her own personality, strengths and needs. We do not use stereotypes, such as "they are all so loving" or "they are always such difficult children". Focus on the person's unique and positive characteristics. Would you want people to focus on your challenges?
Finally, we ask that you never, ever use the R-word. The phrase "mental retardation" is considered a medical term but it, along with any variations used in a derogatory way, are considered extremely dehumanizing and offensive -- as offensive as any racial, ethnic or lifestyle slur. This is not a matter of politial correctness gone overboard; it's about a better R-word...RESPECT. In fact, we challenge you to take the pledge to end the R-Word by clicking HERE.
Look at the child or adult with DS-ASD in your life as an individual -- your child, your family member, your student, your client, or your FRIEND. Everyone wants to be loved and appreciated for the unique person they are. Everyone wants to be loved, appreciated and included!