Down Syndrome and Autism (ASD)

Every individual with Down syndrome has their own strengths and weaknesses, and certainly their own personality. As a parent or caregiver, you know firsthand how your loved one is progressing, reaching milestones and acquiring different skills.  When you feel that their behavior or development has shifted, changed or has become stagnant, you may wonder if anything more may be happening.

When concerns arise, we encourage you to talk to your healthcare team and explain to them what you are seeing and how it seems to be affecting our loved one’s development.  The more data you can share, the better informed they can be to determine what kind of evaluations may be necessary.  When seeking a medical consult regarding ASD, it’s important to talk with someone who is familiar with diagnosing co-occurring conditions in someone with Down syndrome. Until recently, it was commonly believed that the two conditions could not exist together. As data is continually gathered, medical professionals are recognizing that people with Down syndrome may also have another diagnosis such as ASD or ADHD.

A Parent Experience

Collecting Data for Your Healthcare Team

The DSAGC hears from parents frequently about concerns that their loved one may have more going on than just Down syndrome – like (ASD) autism – followed by questions regarding how to go about getting a formal assessment. We encourage all to collect and organize concerns about their loved one and talk openly with their healthcare team. It always helps to have someone who is familiar with co-occurring diagnoses to be part of that conversation, as a co-occurring diagnosis of ASD can be challenging since many of the characteristics are common to both conditions- particularly in the area of communication and behavior.  CCHMC DDBP have psychologists that are familiar with how ASD may present itself in a person who also has Down syndrome.

Here is an informative video by an SLP at the Down Syndrome Resource Foundation to help better clarify how these two diagnoses may coexist.

Before you bring your thoughts to the team, reflect on these common characteristics.  It can also be beneficial to ask your loved one’s other caregivers or school team to give their input. The more of these you may be experiencing across all settings – and consistently – the more important it is to relay to the healthcare team. 

What to Do if You Suspect Autism

If after viewing the information video and reviewing these common characteristics, you suspect your loved one may have ASD, your first step is to consult with one or more members of your healthcare team, such as your speech therapist, pediatrician or child psychologist. If they share your concerns, they can provide you with a referral for a formal assessment. If you feel like you need to get another opinion, it’s best to consult with someone who has experience in co-occurring diagnoses. The psychologists at CCHMC DDBP should be of help. Keep in mind that many insurance companies require a formal diagnosis to be done by a clinical psychologist in order to approve any additional therapies that may come along with an ASD diagnosis. 

For many parents, another label for their child (and another long series of assessments) is the last thing they want- and that is totally understandable. However, an accurate diagnosis is important for truly understanding your child and getting the best possible support to help them achieve their fullest potential.

DS/ASD Support

Connecting with Other Local Families

In an effort to support families with loved ones who have or who are suspected to have a dual diagnosis of Down syndrome and autism (ASD), the DSAGC is offering a newly-formed support group for parents and caregivers. The goal of this group is to connect families and help support one another by talking through challenges and successes while guided by a qualified group facilitator. Participants will benefit from the facilitator’s knowledge of strategies to help in extra stressful situations. They will be able to encourage each other as caregivers and can share and learn firsthand about resources to help during the many stages of this journey. Register

Behavior Tips to Help with a DS/ASD Diagnosis

In addition to general behavior tips, you may want to pursue a Functional Behavior Assessment (FBA) with your loved one.  An FBA is a process that identifies a specific or target behavior that interferes with a student’s education or workplace responsibilities. The assessment attempts to designate the particular behavior, identify the factors that support the behavior, and determine the purpose of the behavior. From there, a behavioral plan can be created and implemented. This is beneficial in identifying the baseline data and for developing beneficial interventions.  

Excerpt from Kennedy Krieger Institute

Parents of children with Down syndrome and autistic spectrum disorder (DS-ASD) are especially in need of tips to manage inappropriate behavior because there is so little information available about this dual diagnosis for parents and professionals. As parents, you become comfortable accommodating your child's learning style based on information about Down syndrome and your own experiences. The latter diagnosis, autistic spectrum disorder, is then superimposed on the first. Many parents feel overwhelmed at this point. They feel as though all hope for modification is lost. However, if you approach your child's behavioral difficulties that are often associated with autistic spectrum from a systematic, behavioral perspective, you will feel renewed hope for not only behavioral management, but also for skill development. Read more

Placing boundaries on vocal self-stimulation

This series on “Sensory Issues” can be found in the blue book, “Autism Discussion Page on the Core Challenges of Autism.” http://www.amazon.com/s/ref=nb_sb_noss_2...

Vocal stimming (sounds, not words) can occur for a variety of reasons. Depending upon the vocalizations, if it has a rhythmic pattern to it, many children simply enjoy the sound of the vocalizations. Some children enjoy the vibration they feel from vocalizing and the cause and effect from being able to control the rhythmic pattern of stimulation. For other children, vocal stimming can be used to calm the child when over-aroused and alert the child when under-aroused. It can occur when they are over-excited or again when bored. It is used to calm and organize the nervous system. It can also be a coping skill for blocking out unwanted stimulation. I find that vocal stimulation is often just an enjoyable rhythmic pattern that is fun to produce, listen to, and feel. It is predictable and easy for the child to control. In some cases where the vocal stimming is repeating words or phrases, it can also be a way for the child to practice saying words in fun patterns.

Self-stimulation is one of those behaviors that are not inherently bad but maybe annoying or interfering at certain times and under certain conditions. For example, it may be fine to vocal stim at home, but not at the movies. It is not the behavior itself that is bad, just undesirable at certain times and places. What you want to do is teach the child under what conditions it is allowable (at home, when alone, etc.), and which conditions it is not allowed (classroom, movies, group activities, etc.). Help the child learn when it is allowable, and when and where it is not appropriate. You don’t have to stop the behavior, teach when and where it is appropriate.

  1. Make a few rules around engaging in the vocal stem. You might want to write a social story around when it is appropriate and when it is not. Make sure to acknowledge and validate the importance the stimming has for the child while teaching him when and where it is appropriate.
  2. Review these rules frequently, especially before entering events where vocal stimming is not acceptable. Let him know when it is not acceptable, but also when and where it will be allowed. If the setting or activity has a place and time for which the child can engage in the stimming, then review that with him.
  3. When vocal stimming is not appropriate, try and provide an oral substitute like chewing gum. If you frequently use chewing gum, then it can become a cue that “When I chew gum, I do not stim.” Tell the child to chew instead of vocalizing. Stay close by and periodically praise the child for not stimming. If the child starts to stim, calmly redirect him to stop and chew his gum instead. If the child is older, you might want to use a gestural cue like putting your finger up to your mouth to signify "stop stimming." If he stops, wait a minute and then praise him for not stimming. If he keeps stimming, "stop the action" until he stops, or briefly move him away from the fun activity until it stops. Over time the child learns when it is appropriate and when it is not appropriate to stim. However, I tend not to use punishment, only redirect and reinforce desired behavior.
  4. When entering stressful situations, if the vocal stimming is used to either mask or avoid stimulation or to cope with being overwhelmed, identify a safe area where the child can stim and regroup as needed. By very aware of your child’s state of being, and whether the vocalizing is for fun or coping with stress. Respect the need behind the stimulation before trying to suppress it.

I usually try to attack an issue cognitively, emotionally, and behaviorally. So, in this case, you want to (cognitively) work with him in understanding the effect his behavior has on others (social story) as well as there is a time and place for stimming, recognize the (emotional or sensory) function the behavior serves for him, and try to provide an appropriate alternative behavior (chewing gum) to take its place.

Many children on the spectrum are attracted to repetitive, rhythmic patterns. For them, the rhythmic sound and vibration and the sense of controlling it are very inviting. For these children, it holds strong sensory value for them. When the vocal stim is allowable, try engaging in the vocal stimming with your child. Use it to “engage” with the child, imitating and animating his vocalizations. This shows the child you value what he is attracted to and wish to share the experience with him. Once you have his interest, try to add little variations to it and see if you can get him to copy you. Try to expand the pleasant vocalizations for greater enjoyment.

We all have our own forms of self-stimulation (biting nails, playing with our hair, doodling, tapping our feet, humming, smoking, etc.), which serve the function of regulating our nervous system. Unless it is injurious, most self-stimulation is functional and adaptive, and not inherently bad and something to suppress. However, over time, the child learns what self-stimulation is allowable in public and which stimming needs to occur in privacy. Never stop the behavior without providing a substitute, and teach when and where it is appropriate. We will all live more comfortably while respecting each other’s individual needs.

Toilet Training: Ten Step Habit Training

This series on “mentoring children on the spectrum” can be found in the green book “Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies.” ttp://www.amazon.com/s/ref=nb_sb_noss_2...

Toilet training is one of the most asked about concerns of parents with children on the spectrum. There are a variety of issues (physical, sensory, exaggerated fears, etc.) that can interfere with effective toilet training. Although we are all “creatures of habit,” children on the spectrum are even more so. Once in the habit of voiding in their diaper, the children are often comfortable staying with that habit. This is routine to them, and they may resist changing that routine. To the children, there are no good reasons for them to stop their current “habit.” To reduce a “habit” (eliminating in the diaper) we need first to create a new habit (eliminating in the toilet). To create a new habit, you need to have a very structured, scheduled routine that occurs frequently and consistently across time. Also, we need to make it as enjoyable as possible and rewarding when followed. The following procedures are a basic toileting program by using habit training.

  1. Keep a journal of what times your child has toileting accidents. Over time you may see patterns of when your child typically eliminates in his diaper or has wetting or bowel accidents.
  2. The first step is to create a schedule of when to sit the child on the toilet. There are two ways of doing this. From the step above, by knowing the times when your child typically eliminates, create toileting trials that are approximately 15 minutes before the times when elimination usually occurs. The other, a more popular schedule is to toilet the child on a schedule of every 90 minutes, after meals, before and after going places. The more toileting follows routine events in the child’s daily schedule (e.g., after meals, before leaving the house, etc.), the more of a routine habit toileting becomes.
  3. Make sure toileting is comfortable for the child. If they are young, make sure they can sit comfortably on the toilet and that their feet can rest on the floor. If they are small, you need to use a potty seat and a stool to place their feet on. If your child has known sensory issues, try to purchase a potty seat, or modify the current one so it accommodates his/her sensitivities.
  4. For each toileting trial, take the child to the toilet, assist him through the process, sit him on the toilet, and make sure he is comfortable. Stay right there with him and encourage him to “pee” or “poop” in the toilet. For most children, it is easier to first work on peeing in the toilet since this function is usually easier for them to control. You can increase the understanding of what to do by having either a picture sequence for using the toilet on the wall next to the toilet or read a social story about using the potty. Some parents will even model/demonstrate for the child by having the child observe them using the toilet. Remember, the child may not know that it is ok for him to poop or pee in the toilet. They are used to eliminating in their diaper. They may not associate that they are supposed to eliminate in the toilet.
  5. Set a time timer (visual timer) for 3-5 minutes (for some children longer), so the child knows how long to sit on the toilet. Stay with him to help occupy his time and to tell if he eliminates in the toilet. Some parents will run water to help initiated peeing; some will pour a little water between the child’s legs to simulate urinating. Make it fun and have a good time. Encourage him or her to pee in the toilet. When he does eliminate in the toilet, clap, and praise and make a big deal of it! If needed, use a concrete reward for voiding in the toilet. If he doesn’t eliminate at the end of the time, do not scold or counsel, simply end the trial and try again next time. Keep toileting positive and fun.
  6. If children are not used to sitting on the toilet for at least three minutes, then you may need to first focus on teaching them to sit on the toilet. Try making toileting time fun. You can purchase a portable table that can be placed alongside and over the child sitting on the toilet so that they can play with toys or favorite games. You might play their favorite music. You may also want to invest in a visual timer (time timer) so they can see how long they need to sit on the toilet. If your child sits on the toilet only 30 seconds, then start the timer at 30 seconds. Once the time is up, praise heavily and end the trial. After three straight successful trials, expand the time by 5-10 seconds. Gradually keep adding longer and longer times as long as the child is successful.
  7. If praise is not strong enough to motivate eliminating in the toilet, then use more concrete reinforcers (favorite snack or drink, video, favorite toy, etc.). Have the item right there to give immediately. Draw reference to the pee or poop in the toilet, give the reward, and immediately praise. If the child associates the toilet with eliminating, and he is old enough to delay time, then using a reward chart (e.g., star chart) can be helpful. For example, for a child who has the understanding, you might put up a star chart with five squares on it. The child gets a star in one square each time he voids in the toilet. When he fills up the chart (five stars), he earns a special outing, rents a video, buys a small toy, etc. Keep it positive and fun!
  8. While implementing the toileting program, keep a chart that tracks when the child uses the toilet, if he avoids in the toilet, and when he has accidents. You may want to adjust the times for toileting if you still see a pattern of accidents occurring. Hopefully, by increasing the frequency of the child eliminating in the toilet, you will see a corresponding decrease in toileting accidents.
  9. Once the child learns to eliminate in the toilet, if he still is having accidents, then implement “dry checks.” Midway between toileting trials, check the child to see if he is dry. Build in reinforcement for being dry (earn points, tokens, access to favorite toys, etc.).
  10. Try to avoid scolding, counseling, or punishing the children when he has an accident. You want to keep toileting positive and fun. When accidents occur, simply help the child clean up with minimal emotion given to the accident. It is fine to have the child help you clean up.

Remember to keep to the schedule and stay very consistent with implementing the procedures. It takes time to learn a new habit, especially when it must replace an old one. For some children they may have more sensory or physical issues that may cause barriers to successful toileting. Get extra help by consulting a professional or purchasing a book on toilet training for children with special needs

Treating Acting Out, Escape Behavior

This series on challenging behavior can be found in the green book, “Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies.” http://www.amazon.com/s/ref=nb_sb_noss_2...

Explosive behavior (head banging, biting, slapping self, attacking others, destroying property, etc.) is often a form of “escape” behavior. It often occurs under conditions of frustration, anger, discomfort, sensory overload or pain, and serves to help the person “escape or avoid” unwanted events. It often means we have placed the child in a situation for which the demands of the situation outweigh the child’s current skills to deal with them. The child acts out, and we either take away the demands, allow them to escape the demands, and avoid giving these demands again in the future. Consequently, the child’s use of acting out is reinforced to occur again under situations of frustration. Often, once the child learns to use explosive behavior to escape unwanted situations, it can become an automatic response to even simple frustration. They may start acting out whenever anything doesn’t go their way; demands, not getting what they want, discomfort, delays, waiting in line, etc. It can become a very conditioned behavior in all situations of distress.

Unfortunately, we often try to change the child’s behavior without first looking at changing the conditions that lead to it. If the child is acting out to escape or avoid a situation, we must ask ourselves, “Why does the child feel the need to escape?” “What is it about the situation that is causing distress?” If we assume that the “child is doing the best that he can, given the situation that he is in, and his current skill level for dealing with it,” (Ross Green) then our first step should be to change the demands of the conditions to match the abilities of the child. This usually means we (1) lower the demands of the situations that are overwhelming the child, (2) or build in greater assistance to support the child in these situations. To do this, it is important to understand what the child’s vulnerabilities are and how they impact the situation they are in. What are his sensory challenges, the processing problems, and his social and emotional needs? Often, we are pushing the child too fast or too much and overwhelming him. Does he have the skills needed to meet the expectations? If not, what do we need to teach, or how do we need to assist the child?

Often, it may not be the demands of the task, but the way people are approaching the child. The adult may be too demanding, too directive, moving too fast, or “not listening” to the child. Some children respond better to a soft, quiet voice and others to a more upbeat, animated style. Some respond better to a gentle, understanding approach, other to “firm,” matter-of-fact delivery. Not only do we have to match the “task demands” to the child, but we also must match the “interaction style” to that which helps the child feel “safe and accepted.” The way we present the demands can have a lot to do with the child’s response. Often, we try to command and demand when we should invite and support. If the child does not feel “safe” with the person when pressured, he will often freeze and not follow their lead. If he does not view the person as a “working partner,” he will not take them as a “trusted guide.”

After analyzing and changing the conditions that trigger the need to “escape,” we also need to teach the child alternative ways to appropriately “escape” unwanted situations. This is where it is important to teach the child a method of communicating “stop,” and “help.” If the child doesn’t know how to appropriately “protest” and ask for “help,” then he will have to revert to acting out to “protest” and escape. If the child does know how to protest appropriately, or people are not listening to him and ignore his protest, then acting out will still occur. We need to teach appropriate methods of communicating “stop” and “help” and then immediately stop and provide support when they are communicating. More times than not, we ignore his protest (because we want him to do it), and force the issue. The appropriate protest loses its value while acting out takes its place.

Once you have changed the conditions to match the child better and taught more acceptable means of protest, then we need to make sure that it is more reinforcing to use the appropriate protest than to act out. Usually, we (1) practice using the appropriate means of protest (say “stop,” put out hand to gesture “stop,” ask for help, etc.) when not under stress, roleplaying as appropriate, then (2) once the behavior is learned we coach the child to use it when in situations of stress. Since the acting out behavior is so automatic, it will take a while to subside. When the child is experiencing frustration, we need to supportively interrupt the inappropriate behavior and redirect the child to use the newly learned response. Try to avoid allowing the child to escape the situation until he uses the appropriate way of escaping. “Tommy, if you want to stop this say ‘stop.’” Then immediately allow him to escape. This way, he sees that the acting out does not allow escape, but communicating “stop” or “help” either gets him out of the situation or gets help in dealing with it.

For example, Johnny will bite his wrist when presented with situations for which he wants to escape. We might teach him to say the word “stop” and/or put the palm of his hand up to gesture “stop” when faced with situations that he wants to escape. While being supportive, we would gently interrupt the wrist biting and prompt him to say “stop” and/or put his hand out to gesture stop. We would support the child, but try not to let him escape until he produces the newly learned response. Once he protested appropriately, we would immediately praise him and pull away from the demand. Escape would come from the appropriate protest, not the biting. Once we pull away from the demand, we might ask him if he wants help and teach him a sign, word, or gesture for communicating “help.”

To make learning easier, we might preview communicating “stop/help” with him before doing tasks, or taking him into situations that commonly caused wrist biting. Before asking him to do something, we may remind him to use the replacement behavior if the event becomes too hard, and he wants to stop. Or we may remind him how to ask for help. Preview the desired response before doing the task, so it is fresh in his mind. While doing the task, if we see that he is getting distressed, before he starts to bite his wrist, we might remind him if it is getting too hard for him to say stop or ask for help. We remind him before doing the task while doing the task and review how well he did after doing the task. This way, we are supporting the use of the new response from all sides. Once the child learns that the acceptable protest gains escape (or help) and the biting does not, then the acceptable protest will start to take the place of biting.

Occasionally, the acting out is too injurious to avoid blocking “escape” until the acceptable protest is used. It is just too dangerous, or the child is too upset to interrupt and redirect. In these situations, we may not be able to avoid the child gaining “escape” by acting out. Meaning you are unable to block escape, or the behavior is too dangerous to block until the child uses the newly learned protest. In these situations, we may need to add in extra reinforcement (other than praise and escape), to make it more reinforcing to interrupt the inappropriate behavior and use the appropriate response. Often, we will reinforce the child with a reward if he uses the acceptable protest and withholds it if he does not. This way, he is getting added reinforcement for using the acceptable protest. Or, if he can understand a token system he might earn two tokens (points, stars, etc.) for using acceptable protest without acting out, one token if he uses the acceptable protest when redirected from biting, and no tokens if he refuses to use the acceptable protest at all. By using this reinforcement procedure, we are trying to make the acceptable protest more rewarding than the acting out.

Also, for the very intense behavior, in addition to the above, we will use exposure therapy to provide numerous trials to events that are only “mildly frustrating” before moving on to more frustrating events. Often, we fail at these attempts because we immediately try and teach the new form of protest during very heated situations, where the child is simply too upset to teach a new behavior. Even if the child learned the new protest during practice, these situations are just too overwhelming to try out the new behavior. For exposure therapy, we make a hierarchy (list) of common events that set off the negative behavior, from least frustrating to most frustrating. Usually, this list will be broken down into events that sometimes present acting out (less than 50% of the time), events that are 50/50, and events that produce the negative behavior most of the time. We start by creating frequent incidents of minor irritation that will be easier to support the child to use the acceptable protest. This maximizes the chances the child will work with us and learn to use the acceptable protest. Once he can reliably produce the acceptable protest under minor frustration, then we start tackling more frustrating events.

Depending on the frequency, intensity, and length of history using negative behavior to “escape,” it can take a while to replace it with an acceptable form of protest gradually. However, usually, if we stay with (1) changing the conditions to match the child better, and (2) teaching and reinforcing more acceptable forms of protest, the acting out will eventually decrease.

Sensory Processing Health and Wellness

From STAR Institute for Sensory Processing

We estimate that 99.9% of children benefit from a clear schedule during their day-to-day, especially while out of school. Valuing the individual differences of each child makes it impossible to provide a one size fits all option. What we do know however is, you have to remember to include sensory rich activities.
Here's our guide on incorporating sensory rich activities into your family lifestyle and your daily schedule. We hope you find it helpful.