Breaking Free from the Myths about Down Syndrome !
(Stereotypes Often Overhead about the Characteristics of Down Syndrome )
There is a neuromyth that if you do brain training, you will become smarter. This concept is masquerading as science, but has very little basis in fact and you could even say that it is unscientific. Even the Japan Neuroscience Society is warning about this misconception.
Based on this term, I have decided to use the term “Down syndrome myths” to refer to stereotypes I often encounter. The problem with these myths is that they are inconsistent with reality. They become stereotypes and lead to biased views, which can limit the potential of individuals with Down syndrome and cause pain to these persons by damaging their reputation.
No one is perfect. Forgetting this can produce self-assurance that is not based in fact. It is common for everyone to have cognitive distortion that includes assumptions, anticipation, emotional reasoning, focusing only on areas of interest, excessive generalization, thinking that things must be a certain way, reading too much into things, a desire to create a connection with one’s own experiences, overvaluing or undervaluing something, avoidance, black-and-white thinking (+ or –), all-or-nothing thinking, putting a label on something, and so on. Often, people who just focus on one part will miss the importance of the “whole” or may completely reject or accept someone even though there is only one part that is negative or positive.
There are many Down syndrome myths posted on the Internet. Of course, although there is a lot of correct information on the Internet, there is also a lot of false information.
Regardless of whether the Internet itself is good or bad, the Internet is like “graffiti on a street” and can be dangerous if you easily believe what you read without having the proper knowledge. In addition, because the Internet has the ability to create dependency, there is the risk that users will forget reality and become trapped and not be able to escape.
If someone’s child is diagnosed with Down syndrome, their mind will soon be filled with thoughts about Down syndrome. However, this is simply due to a person’s “tendency to notice only things that are of interest to them.” By focusing only on a disorder, such as Down syndrome, they will forget about the large world that exists around them. Parents may also forget that they gave birth to wonderful children who are human beings just like them and, due to a loss of pride, will lose their precious human abilities and rich culture. This is what is most frightening.
The contents of this document contain words that may not make parents and other affected individuals feel good. However, it is not only sweet and kind words that can be informative. Even if I said, “It is for your benefit,” some persons will still be skeptical. You must stop and think about whether it is truly for the benefit of your child. For example, even if eating something sweet makes you feel good, it will just lead to cavities. Likewise, if you just listen to pleasing words, you will be robbed of your ability to think and instead will become dependent, which is like a cavity of the mind. Instead of avoiding unpleasant words, we should question what we hear and say, “Why?” We must think about and try many things, read available books and other literature, and make judgments after considering the information without simply believing it. However, what is even more important is to question the person who spoke or wrote those words directly. That is the most important. Parents and their supporters often say, “I didn’t understand at first, but I understood the meaning after many years.” By addressing suspicions and questions, we can quickly understand each other. It is the job of humans to ask questions, and things that cannot be understood easily usually have the highest value.
The following are some of the myths about Down syndrome.
Myth #1: Children with Down syndrome are innocent like angels and do not do bad things.
It is often said that children with Down syndrome are angels. Actually, however, they are just like other children; they are human beings, not angels. Down syndrome itself is not a sickness or a disorder, but is just a variation of humans. To mothers of children with Down syndrome, I can tell you that you have given birth to wonderful human children. Therefore, it is important to foster their social nature as regular children. In particular, children with Down syndrome are especially good at “acting by trying things,” but if they are not bad actions or anything dangerous, you should ignore them without laughing, saying anything, or becoming angry. If you react, the actions will escalate. While we must be strict when we teach children about dangerous situations or anti-social behavior, this is a general principle of child-rearing. If we are too lenient because we think the children are angels, the important “development of their human abilities” will stop. There are children and adults who shoplift even though they can do many things. This is because they were praised for their techniques alone and were not taught what is important.
In addition, the children are seldom taught to obtain permission by asking, “Can I do this?” However, by not teaching the children, it will be difficult for them to acquire social skills. Because children with Down syndrome are not angels, they must be raised as human beings.
Furthermore, if parents think that the type of child that adults expect is an “angel,” the development of the child’s normal ego will be further restricted and the child will not be able to become psychologically independent.
Myth #2: Persons with Down syndrome are children forever and are cute no matter what age they are.
Persons with Down syndrome look younger than their actual age and are cute no matter how old they are. However, if we always treat them like children, we will move away from their viewpoints and opinions, and they will be conflicted and forget to develop. Although the development of persons with Down syndrome is gradual, their bodies and minds continue to grow towards becoming adults. In addition, because persons with Down syndrome have a tendency to treat the feelings of others as important, they are likely to behave as cute children according to the feelings of others. As a result, their emotional growth will be stunted and they will miss out on an opportunity to become independent.
Myth #3: It is very hard to raise children with Down syndrome.
It is often said that it is difficult to raise children with Down syndrome, but is this really true? To being with, child-rearing itself can be trying in varying degrees. Some parents say that they do not have the confidence to raise children properly. However, if parents are overconfident in their child-rearing abilities, that is a much greater problem. Many parents say it is easier for children to learn from their siblings instead of their parents. This is because persons with Down syndrome have a high ability to perceive the changes in expressions of those around them, and are able to pick up on their feelings and attitude. Some families also say that their other children tend to get sick more often. Actually, some of the large problems in child-rearing can be caused by looking after children too much, spoiling them, and being at their beck and call. Mrs. Sonoko Kawachi, who is a psychologist and a mother who founded the Shizuoka Prefectural Parents’ Association, says, “Even if your child is diagnosed with a chromosomal disorder, just paying a little more attention in raising the child is sufficient.”
In addition, all children get their personality from their parents. If your child is like you, their parents, surely you do not think it is because they have Down syndrome.
Myth #4: Early intervention is necessary for children with Down syndrome so that they can get closer to the level of normal children.
In Japan, if a child is diagnosed with Down syndrome, training is recommended from when they are an early infant. The goal is often to bring the level of the child closer to that of normal children. However, even children with Down syndrome are basically normal children. The only difference is that some of their characteristics are unique to persons with Down syndrome, and to say that you want to bring them closer to normal children is disrespectful. Previously, there was a period in which children were left by themselves when they were young if they were quiet. Iｎ Japan, early intervention began, like in other countries, during this period after it became apparent that intervention can help the children develop. In early intervention, techniques are taught to help children overcome obstacles in their daily lives due to something that they are not good at doing. Things that the children are proficient at doing are used to supplement things that they are having difficulty with. Accordingly, it is different from training designed to bring children closer to the level of normal children. Deciding that training is necessary simply because someone has a disability is a stereotype. However, if the children are educated without cultivating their basic personal skills, or without a deep loving and trusting relationship with their parents, experiencing typical activities of daily life, feelings and emotions, mutual communication, the ability to think and make decisions, and social skills, it will have the opposite effect.
Myth #5: This is difficult for persons with Down syndrome. Even if they try, it is impossible.
When many parents hear that their child has an intellectual disability, they easily think “it’s difficult, so it’s impossible,” which will tend to limit the potential of their children. However, people have a desire and drive to attempt new challenges. This is the same for all children, even for those with Down syndrome. At first, do not think about whether the child can or cannot do something. Start by doing something together that the child likes, and while encouraging the child in things they have difficulty with, gradually add additional tasks. This will help the child build confidence, which will result in them wanting to attempt the task on their own.
Myth #6: Persons with Down syndrome are clumsy.
When I tell people who believe that persons with Down syndrome are clumsy, “There are many people with Down syndrome who are more dexterous with their hands than their siblings,” they are quite surprised. If you ask why the children are clumsy, the usual responses are “their hands are small” and “they can’t hold things between two fingers well.” Dexterity is not related to the size of a person’s hands, and the inability to pinch things between their fingers is just a delay of motor development in using their fingers. If someone always does something before the child has an opportunity to try, any child will become clumsy. Persons with Down syndrome have good fine motor skills, but often because they have a weak gripping strength, they cannot use their hands well. During physical education at school, exercise to increase the gripping strength should be carried out at the same time as muscle training for the upper body. To develop a child’s gripping strength from a young age, crawling, a horizontal bar, and a hanging bar are good. By hanging from a bar, the child will build muscle strength in their arms and shoulders. This also has other effects, such as straightening the child’s back.
Myth #7: Persons with Down syndrome are compliant and will obey others.
Some parents have said, “My child is not docile even though they have Down syndrome. They are rebellious, which is causing problems.” However, the child is just obeying “themselves.” Persons with Down syndrome who are withdrawn or have a mental disorder when they become adults may not have gone through a rebellious phase when they were young or their rebellious phase was simply repressed without overcoming it well. It is not that the child did not have a rebellious phase, it was just not expressed prominently. The child probably has few expressions of uneasiness or dislike, and thinks about how to act after observing. Some children even repress their feelings because they do not want to be disobedient and cause problems for their parents. If parents believe without any basis that their child’s brain activity is simple because the child has an intellectual disability, they might miss noticing the child’s subtle expressions.
Myth #8: Children with Down syndrome do not think; therefore, they do not worry about things.
These words are sometimes said without thinking even by people who are supposed to know persons with Down syndrome well. However, this is not true. Persons with Down syndrome actually think a lot from a young age. People who are able to express complex thoughts in words are able to organize their thoughts. However, for those who have trouble expressing their thoughts, help is necessary. Because people can understand words even if they cannot verbalize them, even if complicated matters are impossible, they are surely able to think about the matter and make a decision. If the people around them try to jump ahead of what they are trying to say, some persons with Down syndrome may rebel, but most persons will be robbed of their ability to think and lose their human abilities.
The cognition (way of looking at things and way of thinking) of persons with Down syndrome is completely different from persons with autism, and is the same as typical persons. Although there are persons with Down syndrome who also have autism, their interpersonal relationships appear to be different from persons with only autism spectrum disorder. The greatest difference between persons with Down syndrome and persons with autism is that if persons with Down syndrome understand something as a whole, it is easier for them to understand its parts and adapt to changes (conversely, if they cannot see something as a whole, it is difficult for them to understand even if you teach them). For persons with autism spectrum disorder, they do not notice the entirety of something (unless you teach them) regardless of their IQ. In other words, persons with autism are the exact opposite of persons with Down syndrome (persons with Down syndrome are said to be the same as typical persons in this respect). However, the special education at most schools for children with Down syndrome is the same as for children with autism. This is thought to be a major reason why the human abilities of children with Down syndrome are not developed.
Myth #9: Children with Down syndrome cannot do anything if you do not teach them.
When I heard this from a university professor specializing in the education of children with disabilities, I was astonished. From people who interact with children with Down syndrome, you are not supposed to hear such things. Because the statements of professionals have a large influence, this is a problem. Actually, persons with Down syndrome obtain information on their own in various situations even if you do not teach them. They think with their own minds, and use information at the appropriate time to make decisions and act. Of course, because a person’s judgment is not always correct, it is good to explain what is correct if they are mistaken, and if their way of thinking is wrong, it is good to teach them in an easy-to-understand manner. By fostering their ability to think, they will be able to adapt to changes, the number of new discoveries will increase, and they will show you their wonderful ideas. However, if they just receive instructions and are told what to do, they may feel that they are not supposed to think on their own. As a result, they will become dependent. Also, if they see someone who does not understand them, they will not try to show their true feelings.
From this myth, you can see a problem in general education. Although we want educators to teach the children so that they acquire comprehensive human abilities regardless of whether they have disabilities, the educators (while studying at universities or while teaching after graduation) must have the discipline to ensure that the children acquire comprehensive human abilities through social experiences and interpersonal relationships. However, I do not think that many educators have this discipline. (Off-the-record: Although it is often said that the education in Europe and North America is better, the education differs greatly depending on the instructor. In Canada, for example, a person advising persons with disabilities about finding employment said that most instructors were stupid. In Europe and North America, there are a number of private educational research institutes that provide guidance to schools.)
Myth #10: Children with Down syndrome feel and behave with animal-like instincts, and they lack intelligence.
These words are often spoken unconsciously and are quite shocking to hear. These are horrible words, which can deprive them of their humanity. I believe that the reasons for prenatal testing are also based on this viewpoint. If people believe that persons with disabilities, such as Down syndrome, are not intelligent, their intellectual development may be inhibited if they are excluded from an intellectually rich environment. In addition, persons with Down syndrome have an instinctive ability for stabilizing personal relationships that is greater than their instincts for sensing life and danger.
Although persons with Down syndrome are thought to be intellectually and developmentally disabled, they have a rich “intelligent ability” that is different from IQ, and it would even be appropriate to say they are “mentally advanced.” If you assume that they have low abilities because they are intellectually and developmentally disabled, you will be limiting their potential, and they will use their natural intelligence only for deceitfulness (tricks or mischief that is inappropriate for their age).
Myth #11: Persons with Down syndrome do not have any worries or stress, and are always happy.
Even specialists and the parents of children with Down syndrome can easily have a misconception about this. Because persons with Down syndrome closely observe other people and have a high ability to find the suitable response for each situation, it is likely that they experience increased stress in interpersonal relationships. Because they will endure and are devoted to their parents, they are likely not to share their pain with their parents. If the parents feel uneasy, persons with Down syndrome will be consumed with worry because they are kindhearted. If this excessive stress builds up, it can cause an adjustment disorder, leading to mental disorders and even psychogenic disease. This is the greatest factor leading to mental issues seen after adolescence. However, in order for the child to be able to say their true feelings, it may be necessary for them to consult a third person they trust who is not an authority figure, a person other than their parents who can empathize with them, listen to them, and talk as equals. This type of person is necessary for anyone during their adolescent period though.
In addition, although it is important to receive information and listen to lectures about Down syndrome because everyone feels insecure about things they do not understand, it will have the opposite effect if you do not have a positive attitude.
When the mother of a 25-year-old woman told the woman, “You were injured when you were in my belly,” the woman blamed her mother and said, “My brothers and sisters were not injured. Why was it only me?” Even if the explanation is given with good intentions, if it lacks objectivity or merit or does not take the feelings of the person into consideration, the person will surely be left feeling unhappy or insecure.
Myth #12: Persons with Down syndrome are stubborn.
Perhaps the greatest myth is that persons with Down syndrome are stubborn. Even acquaintances are likely to agree with this statement even if the person with Down syndrome says just one stubborn word. However, persons with Down syndrome actually have trouble looking ahead and because they have too much imagination, they passively resist things they do not understand or that make them feel uneasy. In addition, because they are persistent in not bending to the will of others regarding their aesthetics or beliefs (similar to craftsmanship), and do not know how to handle their developing ego, they will not be able to listen to other opinions and will not be able to act. Everyone has a stubborn period and the first time is when they are around three years old when they start to demand things exactly the way they want them. If they are always treated as young children and their emotional development becomes significantly delayed, they may exhibit a level of stubbornness that is inconsistent with their actual age. In addition, if a parent and child have a clash of egos with each other that results in a stalemate, you surely do not think that the person with Down syndrome is the more stubborn of the two.
Myth #13: Persons with Down syndrome have a rich artistic talent.
This is often said in the mass media, and many people believe it without any basis in fact. Well, what is artistic talent? If everyone has artistic talent, then every person with Down syndrome is artistic, and if artistic talent is a special ability, then it is a talent that only some people have even if they have Down syndrome. Stereotypes, even if they are believed with good intentions, place people within fixed categories and lead to a distorted view.
Artistic sensitivity can be refined if a person is exposed to genuine art from a young age. Therefore, if you feel your child is artistic, it is possible that you are exposing your child to genuine art.
Myth #14: Persons with Down syndrome are tone deaf and cannot sing well.
Tone deaf is a lack of skill regarding all kinds of music, and is a type of learning disability that includes not only pitch, but also rhythm, and so on. In general, persons with Down syndrome certainly have a sense of rhythm so you cannot say that they have no ear for music. Although many persons are off key when they sing, because many people are able to listen to the music and guess the title, the musical pitch is probably perceived correctly. The reason that many people sing off key is due to a problem with their oral function. Because they will be able to sing correctly if they sing together with others using the correct pitch, their singing abilities will improve with practice that is suitable for them.
Myth #15: Persons with Down syndrome become fat.
Because it is believed that persons with Down syndrome become fat, parents of infants with Down syndrome worry about the weight of their children. However, there are many persons with Down syndrome who are not overweight. There must be a reason. The main factors that cause obesity are: an intake of more calories than are necessary, lack of exercise and a decrease in muscle mass, reduced activity, decreased thyroid activity and other metabolic problems, and a body type susceptible to obesity that is inherited from their parents. Although many persons gain weight after graduating from school, this is because their amount of exercise decreases. For some people, it is because their calorie intake increases. Of course, this is obvious. Because persons with Down syndrome have a shorter height and less muscle, it is better for them to eat less and consume fewer calories. Because the judgment of a person who is not familiar with dietary education or the basics of nutrition is usually wrong, it is better to learn from a professional nutritionist. In addition, because eating is said to be a mental activity, if persons with Down syndrome receive proper dietary instructions, they will be able to manage their own eating habits. They probably even have more control than typical persons. However, because they can easily become dependent on sweet or oily foods, obesity outpatient treatment or other cognitive behavioral therapy is necessary if they become dependent on such foods.
Myth #16: Complications due to Down syndrome are special and require special treatment.
First, I would like everyone to know that persons with Down syndrome have a body type that is slightly different from typical people, but there are no major differences. Although it is true that persons with Down syndrome are more likely to have various coexisting illnesses, most are also seen in typical persons. However, the illness rate is slightly higher than for typical persons or the timing of the illness may be slightly different. Other than “starting with a little less medicine because medicine tends to have a greater effect on persons with Down syndrome,” the treatment is the same as for typical persons. Although TAM (transient abnormal myelopoiesis) occurs in early childhood in the trisomy 21 cells in the bodies of some children, TAM resolves spontaneously in most cases. Because some children may later develop leukemia, regular exams until the age of six are necessary, but most cases resolve even if they develop.
The true nature, symptoms, diagnosis, treatment, and other aspects of an illness can be misunderstood if you lack or have insufficient basic medical knowledge. Because medical terms, like other technical terms, have definitions, there is a risk that persons who are not medical professionals will use them incorrectly with a different meaning. Therefore, it is smart not to use special words. Instead, use words that anyone can understand and are a common language that is normally used in our daily lives.
The foundation of modern medicine is viewing and thinking about things scientifically and objectively. Sentiments that are not directly related to the medical treatment are not included. Although this is probably not only in Japan, science education is confused with technical education, and many people do not know that science starts by questioning things. Even among scientists, there are many persons who have the technical skills, but do not understand the true nature of science. This is precisely what led to the STAP cell dispute, which had irregularities from the start.
Science is not something you believe, it is something that you doubt or question. By questioning something, you are gradually able to see the truth. In Japan, there is a proverb that says “if you look closely at a ghost, you will discover that it is just withered silver grass.” Likewise, there are many things that appear scientific, but are really not scientific if you examine them closely. On television, in newspapers, in the mass media, or on the Internet, there is a lot of non-scientific information that is disguised as scientific. Because science is not certain until it has reached the truth, assertive judgments that rely on literature, lectures, and so on, cannot be considered scientific judgments. Relying solely on information obtained from the Internet and making one’s own judgment is not scientific. In particular, if a person uses only the words from someone who is thought to be an authority on the subject, the information is probably suspect. What is the most important is not the authority, but the contents. In order to obtain a scientific understanding, you must read the literature and other information carefully and correctly. If there is any information that is difficult to understand, you need to contact the author directly to receive a detailed explanation and answers to your questions. Then, you need to think about all of the information on your own before making a judgment.
Actually, it is often thought that persons with Down syndrome have more of a scientific attitude. If they have a problem, they will ask or talk to someone directly before making the correct judgment. However, if their judgment is incorrect or incomplete, it is good to explain the reasons logically. If you speak to an adult with Down syndrome, you will understand that logical thinking comes naturally. For this reason, they are sensitive to unreasonable things, which will make them feel anxious. However, because there are stereotypes that persons with Down syndrome cannot do anything, many of them are not able to demonstrate their ability for logic, which is quite unfortunate.
It is important to know not just “things that you should learn,” but also “things that you do not need to learn,” think about what is best for that individual, and talk with the relevant persons. The ability to be critical is important. Being critical and criticizing are different though. The ability to be critical while understanding that no one is perfect is useful in helping you find your own path in life.
Myth #17: Persons with Down syndrome require special foods, drinks, and supplements.
Quite honestly, special foods and drinks are not necessary for persons with Down syndrome. The foundation of dietary education, such as eating a balanced diet, drinking the necessary fluids without added sugar, and not eating too much, are the same whether or not a person has Down syndrome.
Certainly, the metabolism of persons with Down syndrome is slightly different, and because oxidative stress can affect them more than it does for typical persons, it is thought to better for them to drink tea or other beverages that contain polyphenols, but it is not good for them to drink too much. Although harmful effects from drinking an excessive amount of these drinks have not been proven, waiting until such effects have been proven will be late and could pose a problem. Besides, polyphenols are a chemical substance, and we cannot say that they do not have adverse effects. In addition, there are significant individual differences among persons with Down syndrome; therefore, something that might be beneficial to person A could be harmful to person B. Because traditional foods are based on knowledge that comes from the experiences of eating (drinking) many things and learning whether or not they are good for our bodies, they are mostly alright. However, because it takes a long time to know if something new is good for your body, I think it is better to be cautious. We also do not know whether traditional foods and drinks in other countries, which are thought to be good for one’s health, are suitable for a Japanese person’s body today. Although there are probably not any problems with trying such foods occasionally, we should be careful about eating them daily.
Although there is an endless stream of advertisements for supplements on television, there is usually a disclaimer in small, difficult-to-read print stating, “Individual results may vary.” This is proof that something is not right. This disclaimer means that because it was the user’s decision to use the supplement, the company is not responsible even if the user experiences any health problems. In addition, the company did not investigate what are the results of not using the supplement. Even if you see someone who is happy because the supplements have made them younger than their actual age, the images are usually out of focus or the persons really appear to be their true age or even older. Therefore, clearly open your eyes, and while considering other conditions, view and listen to the advertisements with a grain of salt. It is necessary to have a critical mind. The side effects of traditional herbs are known, and although there are books overseas that raise alarms about their use, only good things are said about them in Japan. Supplements are a mixture of wheat and chaff (the good and the bad), and there is almost no research on the side effects of using them, and so on. If something happens, you will probably only hear, “It was your problem for using them” or “It was your decision.”
In addition, even if there is no problem with a single supplement or herb, there is a risk of problems due to interaction when used together with other substances. For example, vitamin E is included in many supplements, and because it accumulates in the body, there is a problem of taking too much vitamin E if you take multiple supplements. Vitamin A is even more dangerous. If vitamin supplements are necessary, you should undergo an exam to determine what vitamins you are deficient in and take supplements for those.
In Japan, the National Institute of Health and Nutrition has created the following website. The view of this research institute is that “from a scientific viewpoint, supplements are not necessary for children.”
Information system on safety and effectiveness for health food: https://hfnet.nih.go.jp/
Available literature: Brinker, F: Herb Contraindications & Drug Interactions, Eclectic Medical Publications
Myth #18: Persons with Down syndrome age early so there is no use trying.
When a person ages, parts of the body age at different times. Although there are individual differences, persons with Down syndrome tend to age slightly quicker. For example, persons who are 45 years old are said to be similar to 45- to 60-year-old persons. For a person who is at the 45-year-old level, there is no difference with a typical person. However, for a person who is at the 60-year-old level, this is clearly abnormal and requires examinations and treatment. Without assuming that Down syndrome is the cause, you must first investigate many factors, such as reduction in thyroid gland function, reduction in growth hormones, or other endocrine disorder, other physical factors (eye, ear, teeth, internal organ abnormalities, and so on), a living environment that discourages motivation, lack of exercise, depression or other mental disorder, and hereditary factors. Although most illnesses and disorders can be treated, early treatment is the key to recovery.
If a person does not have friends that are the same age as them, or if their parents choose their clothes or hair style, they will age together with their parents because they will not have the same lifestyle or fashion as others in their age group. In some cases, if the person dresses like a child, it may have the opposite effect of making them appear older.
Although skin aging is often mentioned, this is probably due to a lack of the skincare that typical adults do. For example, if you do not apply sunscreen (UV cream) when you go outside in strong sunlight as an adult, your skin will age. Although adults with Down syndrome are slightly stronger against the effects of ultraviolet radiation, worrying too much about a child when sunlight is not strong could have the opposite effect of causing harm. For example, the number of children with rickets has been increasing recently because vitamin D is not synthesized in their bodies if they are not exposed to sunlight. The Japan Pediatric Society recommends a minimum of 15 minutes of exposure to sunlight in the summer and 1 hour in the winter. In addition, worrying too much may limit the merits of going outside.
Some families are worried that exposure to ultraviolet radiation can lead to Alzheimer disease, but this is not the case. When this opinion was mentioned to a professional researcher in oxidative stress, they flatly rejected this notion as ridiculous. Of course, this is obvious. Moreover, it is wrong to think that everything will lead to Alzheimer disease because a person has Down syndrome, and this thinking will be of no benefit to the person.
In some areas, there can be no aging or reduced aging due to Down syndrome. Regarding the types of cancer that develop easily due to old age, the occurrence is reduced or their progress is slowed. Cases of hardening of the arteries (arteriosclerosis) and high blood pressure are also lower. However, smoking (including exposure to second-hand smoke), an extremely unbalanced diet, and other lifestyle habits can lead to significant problems. In addition, if a person inherits genes that are linked to cancer, it would not be uncommon for that person to develop cancer. If you think that it is alright to continue bad lifestyle habits because persons with Down syndrome are less likely to develop hardening of the arteries, this could lead to other serious health problems. Although a healthy lifestyle and regular exams are important, you should consult your family doctor immediately if you sense that something is different. This is important regardless of a person’s age.
Myth #19: When persons with Down syndrome become adults, it is easy for them to regress.
Although in Japan there are many experts who assume for some reason that persons with Down syndrome regress when they become adults, we cannot simply accept the word regression without question.
In physiological medicine, regression is a disorder that is possible due to a reduction in thyroid gland function, convulsions, cerebral infarction, or a special abnormality of the cranial nerves. However, regression is now used differently and is mostly used to describe situations where the parents still play a leading role even when someone has become an adult and situations where a person with limited or few social experiences has adjustment problems with personal relationships at their home or in the workplace. It is thought that because their resilience to failures and setbacks is weak, they do not develop a sense of independence or healthy ego, they go through psychological and social withdrawal to escape the pain of losing the will to live, and they want to return to their childhood when they were protected. Although it is possible to recover with early suitable intervention and improvements to the environment, it is important not only to ensure that the person does not regress, but also to promote growth and development. Although this can happen to anyone who is brought up in an overprotective environment, if you think that you need to treat persons with Down syndrome as special, their human development will be overlooked.
Many experts believe that all persons with Down syndrome will develop Alzheimer disease, but even if Alzheimer disease is observed in a person’s brain, symptoms may not appear. There are even persons in their 80s who do not develop Alzheimer disease (among persons who do not have Down syndrome, some persons do not show symptoms even though they have a serious case of Alzheimer disease). Unless they have inherited the genes from their parents, prevention according to an independent healthy lifestyle is thought not to be impossible. Even if someone develops Alzheimer disease, it is important through lifestyle improvements to slow the progress of the disease and live a good life, but this is the same for all people.
Reference: McGuire, D & Chicoine, D: Mental Wellness in Adults with Down Syndrome, Woodbine House
Myth #20: It seems that a medicine to improve persons with Down syndrome will be developed soon to bring them closer to the level of normal persons.
From a long time ago, many medicines that were said to help Down syndrome have come and gone. A famous example is a medicine called “MD-san,” but the effects were disproven through scientific verification. After that, information spread on the Internet that sugar chains had an effect on development. However, if you think about this medically, it should have no effect. A skeptical mother whose son has Down syndrome (and is also the wife of an internal medicine doctor) had her pharmacologist friend in the United States investigate the components of the sugar chains. Regarding the benefits, the pharmacologist said, “Because it has sugar, it can probably lead to obesity.”
Because medicine to improve the cognition of persons with Down syndrome has been developed recently, this seems to be very good news. The effects of this medicine have even been proven scientifically, but because humans are complex, we cannot simply make conclusions about the benefits and side effects of the medicine. A basic belief in pharmacology, which has clearly been proven throughout history, is that “medicine that works is medicine that has many side effects.”
Therefore, this is probably why there are clinical trials (human testing). Actually, there are even some parents who will travel overseas when they hear about clinical trials. However, you should be mentally prepared because some clinical trials may cause irrecoverable side effects. Although persons who participate in clinical trials understand this and it may be alright if any problems can be resolved quickly, they may not be able to receive proper follow-up or treatment after returning to their home country especially if a person participates in a clinical trial overseas. In addition, the participant may experience severe withdrawal symptoms when they stop taking medicine that acts on the brain. There have also been actual cases of medicines that have severe side effects that were first discovered only after the medicines became widely distributed in the market.
Moreover, even if side effects that appear soon can be treated, medicine that affects the brain during the formative stage may have potential adverse effects that are not known for many years or months afterward. After the fact, it will be too late. Therefore, medicine that acts on the brain basically should not be given during childhood when a lot of development takes place in the brain tissue unless the child has a serious illness that could result in death if left untreated. This is common knowledge in the healthcare field and is ethical.
Although we do not know with certainty what cognitive functions of persons with Down syndrome can be improved, can we hope for good results? If the cognitive functions are improved though, can we say that it is a cause for great celebration? Will it cause the person’s cognitive capacity to be biased or their current abilities to be restricted? Have you given sufficient consideration to these various problems?
Scientific data is different from information for individuals. Data that is applied to one’s own purposes is not scientific and can be very dangerous. Research begins with areas that are easy to investigate. Therefore, a majority of subjects are not researched or are not researched fully. Humans tend to think that things they cannot see do not exist, but this is just their narrow way of looking at the world. However, believing in things you cannot see is not unscientific; it is part of the world of religion or art, which is different from science. It is also called “pre-science” (this term was used by the scientist Ukichiro Nakaya).
Among persons with Down syndrome, some with high cognitive function have mosaicism where their bodies contain many normal cells. However, if we focus on improving only their academic ability and do not raise them properly, such as forgetting about their human abilities, they will have more difficulty in daily life than persons with the standard type of Down syndrome (full trisomy with 3 copies of chromosome 21). This is similar to the thinking that it is good to improve only cognition.
If your mind becomes controlled by Down syndrome myths, you will assume that Down syndrome is a special disorder for which all aspects can be improved with medicine.
A neurological researcher working in the United States has coined the term “neuro con artists” for persons who promote easy methods for improving brain functions. Generally, many persons who are tricked by con artists are quite intelligent. This was also true regarding the members of the Aum Shinrikyo cult in Japan. Conversely, have you ever thought that if your mind was more active, you might become a con artist yourself?
The important thing regarding the activity of the brain is balance. What is necessary for well-balanced child-rearing is “fostering human abilities,” which will form the foundation of daily life. If you charge into only one area, it will be extremely difficult to achieve the proper balance. Because they will not be able to be like super geniuses in their daily lives, it will be difficult to live and they will easily be burdened with suffering. Improving this type of situation will be extremely difficult.
Myth #21: Down syndrome is not inherited.
Perhaps these words make you feel at ease. Certainly, Down syndrome is mostly not inherited from the parents. However, there are some parents who have a translocation that is passed on to their children, and in rare cases, the parents may have a genetic predisposition to trisomy 21 that is inherited by their children. Feeling relief that Down syndrome is not heredity can be hurtful to parents whose children are born with Down syndrome through heredity. In addition, this can lead to a prejudiced view of the many people who have hereditary diseases. Most people have many genes that can lead to illnesses or disorders. Actually, genes are involved in all illnesses. However, even if something is inherited, the environment has such a large influence. Instead of avoiding our genes, we should try to learn how to best live with them and think about an environment with people and things that are suitable for each individual. Ensuring that type of environment is the most important consideration.
Tomoko Hasegawa, M.D. Pediatrician, Medical Geneticist
Genetic Support and Consultation Office
Ex-Director, Division of Clinical Genetics, Shizuoka Children’s Hospital
Translated into English by
Robert Kageyama, professional translator
Father of two daughters, one of whom has Down syndrome