Einstein Syndrome: Down Syndrome with a Positive Attitude

My Child Has These Odd Behaviors!
~or~
Autism in Children with Down Syndrome

by Cyndi Ringoen

Austin’s parents have taken him to the doctor. They have a few concerns to discuss. Austin rejects hugs and kisses from them; he won’t leave his shirt on; he screams every time his mom needs to vacuum the house; he sits for hours by himself quietly humming while lining up cars in a neat row. The doctor observes the child in front of him. Austin won’t make eye contact. He isn’t responding to directions (seems almost not to hear), instead he is quietly sitting while continually flipping the pages of a book. “Ah hah!” thinks the doctor. His diagnosis is Autism.

There is a small, but consistent and significant portion of children with Down syndrome who also become labeled as autistic. Once parents have come to terms with the diagnosis of Down syndrome and all it entails, the addition of yet another label, another set of obstacles often becomes overwhelming. In this article I hope to provide families with demystifying information regarding the label of “autistic,” proactive observation techniques to detect autistic-like or sensory behaviors, and practical ideas for eliminating the behaviors.

Understanding the Autism Label

The label of “autistic,” whether for a person with Down syndrome or not, is a symptomatic label. This means you receive this label if you have a certain number of symptoms on a list. It is important to know that “autism” is not a disease that you can take a blood test or x-ray to detect. What I see in my work with children and families is that many doctors throw around this label rather haphazardly because of a few symptoms. Having the label or not having the label doesn’t change the fact that the family is dealing with a number of behaviors and symptoms that need to be addressed. The earlier that parents can identify and eliminate the symptoms, the better the chance of the child developing without autistic-like behaviors.

Autism is basically a dysfunction of the sensory channels. This means that some senses are hyperactive (over active) and some are hypoactive (under active). Because of this there are atypical responses to different stimuli. We have five main sensory channels and each of them may be affected with hyper- or hyposensitivities.

Sound. For example, it is common for those affected with autism to be hypersensitive to sound. Sound can actually cause pain and discomfort. Parents may notice the following: covering of ears with hands to block out the sound, extremely negative behavior in certain locations, physical withdrawal or auditory shut down in noisy environments, inconsolable crying that only stops when the child is removed from the noise, or hearing and reacting to sounds before others can even perceive them. If the sounds are too uncomfortable the child will learn to totally turn off the hearing and then cease to make progress in speech and language development—sometimes almost appearing deaf. Often when a person is hypersensitive to certain sounds there are other sounds to which they are hyposensitive, or that they do not process at all. This greatly affects speech, as it is the ability to hear and process tones well that culminates in the ability to produce sound and speech effectively. To onlookers this behavior appears strange and inappropriate but most people would react the same way if they were dealing with auditory hypersensitivity. The solution is to address the problem of the hypersensitivity to sound. Then the “strange” behavior will dissipate.

Touch. Touch, or tactility (the ability to interpret tactile input) can be oversensitive causing withdrawal or reactions to deep touch (hugs) or light touch (tickling, tags, clothing material), discomfort with haircuts or hair combing, aversion to water at certain temperatures, aversions to textures—both on the skin and in the mouth, or overactive gag reflex. Tactility can be hyposensitive, meaning the brain doesn’t even acknowledge that something has touched the body. Instead of overreaction there is a lack of reaction. Parents may notice falling and bruising without the normal response, lack of response to hot and cold, lack of ticklish response, and lack of mouth response to hot and cold.

Smell. Hypersensitivity to odors can cause odd behaviors such as hand sniffing, object and person sniffing, aversion to food odors causing gagging or rejection of food. Hyposensitivity to odor can cause problems with lack of motivation to eat, and inability to distinguish between edible and inedible objects.

Taste. Hypersensitivity to taste can cause gagging or rejection of food. Hyposensitivity to taste can cause lack of motivation to eat, and inability to distinguish between edible and inedible objects. Problems with appropriate sensory information for odors and smell can cause serious eating difficulties.

Sight. We have two main types of vision, peripheral and macular/central. Peripheral vision picks up on edges and motion. Central or macular vision is what we use to learn with, we see details with it, we are able to line up rows and columns, and clearly distinguish letter, numbers, words etc. When a person has overdeveloped or hyperperipheral vision they attend to “odd” things–things which have edges and movement: dangling strings, fans, open and shutting doors/drawers, edges of walls, and often their hands and fingers. Underdeveloped macular vision or hypomacular vision causes difficulties such as lack of eye contact, lack of interest in pictures, books, and television.

Persons diagnosed with “autism” have a combination of the above sensory dysfunctions. One of the most common profiles I find in a person labeled autistic is: hypersensitive to light touch, hyposensitive to deep touch, hyperauditory, hyperperipheral vision and hypomacular vision. Austin, described above, has this set of dysfunctions. This type of person is not receiving information in the same way as you and I, and therefore, is not responding to stimuli in their environment as you and I would.

What Parents Should Look For

The most likely reason a child with Down syndrome would begin to be labeled “autistic” is because of something called “sensory play.” Sensory stimulation, self-stimulation behaviors, self-stim, and sensory play are all terms referring to the same type of actions. They are behaviors that a child engages in that are “odd,” repetitive, sometimes obsessive, but they are all inputting information into the “broken” sensory channel. This is so negative because it reinforces what is already wrong. Sensory play does more than just stop the positive development for the moment. It seems to create endorphins in the brain. Endorphins produce happy feelings. As the child engages in sensory play he wants to do it more and more; he craves it; and often it can become an addiction.

There are many, many types and variations of sensory play. A majority of sensory play is visual, often stimulating the peripheral vision. But sensory play can also be auditory or tactile, too. Following is a list of some common sensory play activities:

This is not meant to be a complete list, but rather a general description that may help parents when observing the behavior of their children. Most of these activities are not inappropriate in and of themselves. Some are even developmentally appropriate at certain stages. They become inappropriate and turn into sensory play when they are done repeatedly or obsessively. I have found that parents usually are very good judges of what might be potential sensory play. If I point out some behavior that they should try to eliminate, they often confess that they had a funny feeling about it, or thought it wasn’t positive.

As the child spends more time in sensory play they are undoing the positive developmental input that their parents or caregivers are trying to impart to them. Sensory play does more than just undo current input. It can actually cause significant regression in the developmental and cognitive ability of a child.

One of the most severe examples I ever assessed was a child who had a very involved family. They were spending a lot of time each day with him on his developmental progress. In addition, they were ensuring that he was supervised almost constantly so he could not engage in any type of sensory play. His short-term memory was growing; he was able to speak to me in short sentences; he was reading some words and he was very tuned in and following directions. I saw him about four months later. He was not following any directions; he was totally tuned out, engaging in sensory play constantly. His short-term memory had regressed by two to three years, and he wasn’t able to communicate at all with me.

What happened during the four months to cause this? His mother had given birth to a baby who was understandably taking up much of the family’s time and energy. The older child was then left to engage in sensory play as much as desired for four months. No blame should be put on the family. They were dealing with a real life situation. But this situation illustrates the extreme urgency and importance of stopping any and all sensory play so that a child’s development will continue progressing in a positive manner.

What Can a Parent Do?

My suggestion is for parents to become expert observers of their children’s play. If you notice some of the above-mentioned repetitive behaviors, try to immediately distract and redirect the child’s attention to something more appropriate. Changing this behavior at the beginning is relatively easy compared to the task of trying to change it after it becomes addictive and obsessive. Along with eliminating the sensory play, it is of the utmost importance to have a neurodevelopmental evaluation of the child, which can then pinpoint any sensory dysfunctions and provide you with specific methods of stimulation and activities to normalize the sensory channels. This will offer you the very best possibility of eliminating the “autistic” symptoms, thereby providing your child with the best possible opportunities for continuing in their development.

Normalizing the sensory channels is part of the plan for anyone with sensory dysfunction. What follows are some quick, general ideas regarding appropriate sensory input for helping children develop optimally.

Hearing. I suggest the use of Samonas Sound Therapy, which has a proven track record in reducing sound sensitivities. It can also help normalize the hearing of any frequencies that the child is not hearing well. Used correctly, Samonas or Sonas Therapy should be done very gently with short durations for optimal results. In addition, parents can provide lots of good quality auditory input—reading stories to the child, the child listening to stories on tape, talking face to face to the child.

Touch. Parents can provide tactile input to their child for a few minutes several times a day. Provide deep pressure (squeezing), starting at the fingertips and working toward the shoulders and starting at the toes and squeezing up to the thighs. Deep pressure often calms children who display autistic-like symptoms. Give deep hugs (bear hugs) lots of times a day. You can also provide light touch with tickling (fingertips) or a feather on the limbs.

Smell. Provide the child with the opportunity to smell a variety of pleasant odors, i.e. orange oil, peppermint, coffee grounds. Provide the input for a few minutes, several times a day.

Taste. Allow opportunity to taste sweet, sour and salty tastes to stimulate the taste buds. Use only minute amounts for a child that is hypersensitive to taste. Provide the input for a few minutes, several times a day.

Vision. Provide lots of opportunity to develop good central/macular vision. Talk face to face as much as possible. Play catch; pop bubbles. Practice visual tracking by holding small toy away from face and moving it slowly side to side and up and down for child to follow. Discourage inappropriate use of peripheral vision (described above as sensory play). High interest television and videos, if monitored by parents, can be used to help develop central vision. The child must sit at least three feet away and be looking directly at the TV, and not out of the corner of the eyes. Looking at books and picture cards is also a positive visual stimulation exercise.

Stopping Sensory Play. By far the most important thing you can do for a child with autistic behaviors is to stop all the sensory play and spend as much one-on-one time with them as possible. If you detect sensory play early, then all you need to do is to distract and redirect the child’s activity and it will not likely develop into anything more serious. However, if you are the parent of an older child who has done some of these behaviors on a consistent basis your job will be more difficult. By structuring the child’s down time so that someone is with them, interacting and playing with them, you will reduce the sensory play because there will be less time for the child to engage in it. Sometimes it means removal of certain types of toys that seem to increase the sensory play.

Inputting the appropriate information to the sensory channels will help the child to gradually become interested in their environment in a more typical way. Stopping sensory play in a child for whom it has become a way of life is difficult. But usually this only lasts a certain amount of time, until the “addiction” quality wears off from lack of stimulation. As the sensory play decreases, the parents start to enjoy interacting with and discovering a new side of their child—a child who is more “tuned in,” less withdrawn, more interactive, and easier to teach.

Conclusion

Autism is just a word. It is a word for a group of symptoms. If your child acquires the “autistic” label or begins to display sensory dysfunctions, you will need to address each of the individual issues. The good news is sensory problems respond very well to intervention, thereby eliminating the original symptoms.

See also:
Autism: Steps Toward Recovery
Search or more on autism on this site.

Cyndi Ringoen is a certified neuro-developmentalist who writes individual, home-based educational programs for parents to do with their children. Her expertise covers a range of disabilities and “labels” including Down syndrome and autism. As a mother and foster mother of many children with disabilities over the years, she has conducted neurodevelopmental programs in her own home with her children. She is a founding member of ICAN, an association of neuro-developmentalists, and through ICAN can refer parents to a neurodevelopmental practice near their home.