Understanding “Normal” Behavior In Your Child With Down Syndrome
As Moms of children with Down Syndrome we worry about our kids…A LOT. We have worries that other Moms just don’t and we may ask ourselves…
“Is this behavior normal?” or “Do other people with Down Syndrome do x,y, and z?”
While everyone is unique, including individuals born with Down Syndrome, there are some common characteristics including strengths and weaknesses for people with DS. While these are certainly not universal truths, having an understanding can help clue you in as to why your child may do certain things.
Getting a thorough health assessment with professionals who are experts in people with Down Syndrome is not always readily available or feasible for some of us. Sometimes our guts are telling us this is normal for our kiddos but we just need a little reassurance.
I love to read and when I have questions I turn to books. I have found the book Mental Wellness in Adults with Down Syndrome by Dennis McGuire Ph.D and Brian Chicoine M.D. to be extremely educational and helpful when I’m asking myself if a certain behavior is “normal”.
These books can be found online for FREE if you want to check them out for yourself.
Now Mama Bears, don’t answer big questions and base big decisions on information in a blog. Always consult a professional who knows your child when necessary and remember…you are one of the experts.
Hey Mama Bears, full disclosure here. There are affiliate links in this post so if you click on the link and buy the product I will earn a small commission. Now that we’re clear on that let’s get back to rocking life with special needs!
Max pondering the question…what is “normal” behavior?
What Is “Normal” Behavior In People With Down Syndrome?
First, I use the term normal loosely. I mean what is normal really?
Dr. McGuire and Dr. Chicoine tell us there are clear definitions for abnormal behavior and psychological problems. The Diagnostic and Statistical Manual of Mental Disorders, 5th edition (aka DSM-5) published by the American Psychiatric Association clearly describes diagnostic criteria used in the United States to diagnose mental health disorders.
However, the DSM-5 criteria are less clear when describing a person with an intellectual disability because these guidelines were developed for people without an intellectual disability.
We need to view behavior on a continuum with one end of the spectrum being behavior that is clearly abnormal and at the other end behavior that is clearly normal. Between those two extremes there’s a whole lot of middle ground and we must take into account the developmental stage of an individual, their communication skills, and common characteristics of people born with Down Syndrome when assessing behavior.
An important side note here is that not everything should be chalked up to the person having Down Syndrome while at the same time you can’t ignore the fact that they do.
It’s a delicate balance.
Things To Consider When Evaluating Behavior In Your Child With Down Syndrome
#1 Developmental Age
Considering the developmental age of your child is super important. Your child with Down Syndrome may physically be 18 years old but developmentally they may be 7 years old. This is important because while we would expect a 7 year old to talk to themselves we would not expect it of an 18 year old.
In the book, Dr. McGuire and Dr. Chicoine tell us that in their experience many adults with Down Syndrome have developmental ages ranging from 4 to 12.
Here’s the thing though, their developmental age can vary across different categories. Your child’s language comprehension may be at the level of an 8 year old but their expressive skills at the level of a 4 year old.
Now, you may be thinking to yourself how do I know where my child is developmentally?
This is where all the testing they do in school can really help. Typically, schools will do psychological testing to provide insight into your child’s developmental age. This coupled with you being familiar with the behaviors and characteristics that are commonly seen at each developmental age should give you an idea of where your child is at.
#2 Differences In Emotional Response And Development
There are some common characteristics of people with Down Syndrome that are important to note when looking at their behavior such as their emotional response. When I tell people I have a son with Down Syndrome it’s super common for people to say things to me like “Oh people with Down Syndrome are always so happy!”
This is a myth people.
In truth, they experience a wide array of emotions just like anyone else and may even exaggerate the emotion they are feeling. I can attest when Max is mad he’s not shy about letting everyone know he’s mad. He’ll cross his arms, stomp his foot, and scrunch up his face.
Unfortunately this commonly believed stereotype can place unrealistic expectations for behavior on our loved ones with Down Syndrome. A well intentioned but ill informed co-worker or aide may believe there’s something wrong if our child is not happy all the time when in fact they’re just feeling normal emotions.
#3 Sensitivity and Empathy
People with Down Syndrome have a strong sense of empathy and may reflect the emotions of those around them.
This definitely rings true for my son Max. If someone in the family is upset he becomes upset too. Knowing this it’s easy to see how our loved ones with DS may be sensitive to tension or conflicts between people who have a big role in their lives such as Mom, Dad, siblings, or teachers.
If your child with DS starts to exhibit sadness or anger on a regular basis, while it may be hard to do, it’s important to think about how the moods of others around them may be playing a role as well as how relationships may be impacting them.
#4 Delayed Grief Response
People with Down Syndrome often have a delayed grief response where they will begin the grieving process about 6 months later. Dr. McGuire and Dr. Cichoine write it’s not completely clear why this delay occurs but it could be due to slower cognitive processing. Meaning it may simply take our loved ones with DS longer to understand that a loss has occurred and that the loved one is not coming back.
This is important to know because if Grandma passes away, initially your child may appear to not be affected and you may be wondering why. Six months down the road though they may begin their grieving journey by crying or feeling sad. If you’re not familiar with the delayed grief response you may be completely befuddled as to why your child is all of a sudden exhibiting these emotions.
#5 Language Delays
In general, receptive language skills are better than expressive language skills in people with DS.
In other words, people with Down Syndrome can understand what is being said to them better than they can tell us what they’re feeling or what’s going on inside their heads. This can lead to anger and frustration or even depression as they withdraw from trying to communicate. Think about how you’d respond if you knew what you wanted to say but couldn’t say it in a way others around you would understand.
#6 Processing Speed
It takes people with Down Syndrome longer to process information in their brain. In addition, Dr McGuire and Dr Chicoine share that they also have a limited ability to shift processing speed in different situations which can be problematic. Responding to an urgent situation can be very distressing for people with Down Syndrome because of this limited ability to shift processing speeds.
For example, Max likes to hand out Halloween candy. He can handle a steady flow of trick or treaters who wait their turn, but he becomes overwhelmed if there’s a large group of trick or treaters all jostling for candy. He may start yelling or he may even just set the bowl of candy down and walk away.
Delayed processing speed can also be evident when having a conversation with a person with Down Syndrome. When asked a question they may pause (for quite a while) before giving a response. This could be misinterpreted as being rude or not interested in engaging in a conversation. Problems can also arise if a person with DS is given multiple directives before the person is able to process them. This can be a huge issue in an employment setting.
#7 Time Reference
The concept of time is abstract. Understanding the past, present, and future is something most of us take for granted and while our loved ones with DS are quite good with concrete concepts they struggle with abstract ones.
This can lead to confusion in conversations. Drs. McGuire and Chicoine write that some of their patients were diagnosed as psychotic by other practitioners because the person with DS appeared to be disconnected to the reality of the present.
When thinking about this I’m reminded of the time Max’s aide texted me and asked if our dog had died. Our dogs were all perfectly fine but Max was telling her the dog died and he was quite upset.
I pieced together that Max must have been reminded of my brother’s golden retriever who had passed two years prior. Our loved ones with DS have really strong memories so Max was somehow reminded of my brother’s dog, which led to the memory of him dying which led to Max having a little grief session while at school and because he doesn’t understand the concept of time his aide thought it happened recently.
In Mental Wellness in Adults with Down Syndrome we learn that sometimes the misunderstanding may be due more to language usage of past and present tenses rather than the lack of true understanding.
Dr. Libby Kumin, a speech-language pathologist theorizes some people with DS never learn to use verb endings correctly because of hearing problems particularly when younger preventing them from hearing the final -s or -ed on verbs and others don’t master irregular verbs due to language learning difficulties.
#8 Concrete Thinking
As mentioned previously, people with Down Syndrome understand concrete concepts well but struggle with abstract thinking. They do really well in jobs with concrete tasks but problems arise if the task changes and they have to take what they have learned and apply it to a new situation.
For example, Max can make himself a sandwich. He gets out the bread from the bread drawer, cheese, lunch meat, and mustard from the refrigerator. Now, if the mustard was not in the refrigerator because we used it all up he may not go into the pantry to grab a new bottle to use.
The book also talks about how communication is often spoken in a concrete way when it’s meant to be interpreted using abstract reasoning skills. I had to chuckle when they used the example of a young woman with Down Syndrome working in an office who was told by a coworker to “call any time” if she had a question. Well after a few 3 a.m. home phone calls to the coworker, the true meaning of “call any time” had to be clarified!
#9 Generalization Skills
The ability to take what is learned in one setting and apply it to another setting is to be able to generalize skills. Due to their weakness in abstract thinking this is very hard for people with Down Syndrome.
Max may be able to vacuum our home using our vacuum but if he went to another house he would likely struggle to perform the same task without assistance.
#10 Self-Talk
Self-talk is very common in people with Down Syndrome. It's a social behavior and plays an important role in the development of a new skill as well as the development of mental thought processes. It’s actually a helpful coping behavior and rarely a sign of psychosis in our loved ones born with DS.
Max uses self-talk a lot! It helps him process events, direct his behavior, vent emotions, and entertains him. I wrote an entire post about self-talk so if you want to learn more head on over to Understanding Self-Talk In Your Child With Down Syndrome.
#11 Sameness And Repetition
Another common characteristic of our loved ones with Down Syndrome is their preference towards sameness or repetition. This is something we groan about in our home because Max likes to listen to the same music videos and movies ALL THE TIME.
Seriously, he will listen to the same music video on YouTube for an hour before moving on to something else! Dr. McGuire and Dr. Chicoine call it “the groove” and tell us it has many advantages such as helping our loved ones with DS maintain order in their life and optimize use of their skills.
Sometimes though the lack of flexibility can make things difficult in a world where we all know things change. When their “groove” is interrupted people with Down Syndrome can become upset.
So there you have it Mama Bears! When your child with Down Syndrome does something that has you scratching your head, think about this post!
Understanding what is normal or typical for our loved ones with Down Syndrome helps us comprehend why they do what they do. It also gives us a reference point for what is normal and what may not be for people with DS.
Remember all behaviors should be viewed on a continuum and finding that delicate balance of acknowledging that they were born with Down Syndrome while not blaming every little thing on the fact that they were born with Down Syndrome.
Mama Bears I hope you found this post helpful. If you did enjoy this post then consider checking out…
6 Brain Differences In Your Child With Down Syndrome And How It Impacts Behavior
7 Common Behavior Issues In Children With Down Syndrome And Tips To Manage Them
15 Best Behavior Hacks For Your Child With Down Syndrome
Let’s rock this special life!
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