Tips for Successful Haircuts For Autistic Children
Haircuts can sometimes be difficult for people with autism. The challenges can range from sensory issues to anxiety about what will happen during the haircutting process. Autism Speaks has partnered with Snip-its and Melmark New England to develop a haircutting training guide to provide information to families and stylists as to how to make the haircutting experience more positive for children with autism.
A video was created that shows the haircutting process. Stylists will be provided with tips about how to make the haircutting experience more successful. Families and caregivers may want to view the video with their child with autism, so that the child is more familiar with the process, which may result in less anxiety about haircuts.
Occupational therapy (OT)
Occupational therapy (OT) treatment focuses on helping people with a physical, sensory, or cognitive disability be as independent as possible in all areas of their lives. OT can help kids with various needs improve their cognitive, physical, sensory, and motor skills and enhance their self-esteem and sense of accomplishment.
Some people may think that occupational therapy is only for adults; kids, after all, do not have occupations. But a child’s main job is playing and learning, and occupational therapists can evaluate kids’ skills for playing, school performance, and daily activities and compare them with what is developmentally appropriate for that age group.
According to the American Occupational Therapy Association (AOTA), in addition to dealing with an someone’s physical well-being, OT practitioners address psychological, social, and environmental factors that can affect functioning in different ways. This approach makes OT a vital part of health care for some kids.
Applied Behavior Analysis (ABA)
“Applied” means practice, rather than research or philosophy. “Behavior analysis” may be read as “learning theory,” that is, understanding what leads to (or doesn’t lead to) new skills. (This is a simplification: ABA is just as much about maintaining and using skills as about learning.) It may seem odd to use the word “behavior” when talking about learning to talk, play, and live as a complex social animal, but to a behaviorist all these can be taught, so long as there are intact brain functions to learn and practice the skills. That is the essence of the recovery hypothesis–for many children, the excesses and deficits of autism result largely from a learning ‘blockage,’ which can be overcome by intensive teaching.
Typically developing children learn without our intervention–the world around them provides the right conditions to learn language, play, and social skills. Children with autism learn much, much less easily from the environment. They have the potential to learn learn, but it takes a very structured environment, one where conditions are optimized for acquiring the same skills that typical children learn “naturally.” ABA is all about how to set up the environment to enable our kids to learn.
Behavior analysis dates back at least to Skinner, who performed animal experiments showing that food rewards lead to behavior changes (learning). This is accepted by everyone who wants to train their dog to ‘go’ outside, though we are not so inclined to believe the same of ourselves. People, fortunately, respond to a broad range of reinforcements (rewards); an ABA teacher may use “edibles” at first, and then move on to a much wider range of “reinforcers.” The skills that we more often think lead to learning–motivation, self-discipline, curiosity–are marvelous and essential to our development–but those are truly sophisticated “behaviors” that bloom only after more basic language and social skills are in place.
Conversely, any new behavior that an animal (or you or I) may try, but is never rewarded, is likely to die out after a while (how often will you dial that busy number?). And, as common sense would have it, a behavior that results in something unpleasant (an aversive) is even less likely to be repeated. These are the basics of behavioral learning theory. ABA uses these principles to set up an environment in which our kids learn as much as they can as quickly as possible, with a constant emphasis on the use of positive rewards. It is a science, not a ‘philosophy.’ Even the “as quickly as possible” part is based on science, since there is some–not conclusive–evidence that the developmentally disordered brain “learns how to learn” best if the basic skills are taught in early childhood.
Behavioral learning is not the only type of learning. Most learning in schools is from an explanation or from a model, what people call natural learning. Typically developing children learn from their environment (other people) at an astounding rate, usually completely unassisted. The whole point of ABA is to teach the prerequisites to make it possible for a child to learn naturally. If our kids could learn without assistance in the first place they wouldn’t have autism!
In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.
This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.
How Common is Down Syndrome?
One in every 691 babies in the the United States is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year.
When Was Down Syndrome Discovered?
For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.
In recent history, advances in medicine and science have enabled researchers to investigate the characteristics of people with Down syndrome. In 1959, the French physician Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome. It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics associated with Down syndrome. In the year 2000, an international team of scientists successfully identified and catalogued each of the approximately 329 genes on chromosome 21. This accomplishment opened the door to great advances in Down syndrome research.
Are There Different Types of Down Syndrome?
There are three types of Down syndrome: trisomy 21 (nondisjunction), translocation and mosaicism.
TRISOMY 21 (NONDISJUNCTION)
Down syndrome is usually caused by an error in cell division called “nondisjunction.” Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21.
TYPICAL CELL DIVISION
TRISOMY 21 (NONDISJUNCTION) CELL DIVISION
Mosaicism (or mosaic Down syndrome) is diagnosed when there is a mixture of two types of cells, some containing the usual 46 chromosomes and some containing 47. Those cells with 47 chromosomes contain an extra chromosome 21.
Mosaicism is the least common form of Down syndrome and accounts for only about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.
MOSAIC CELL DIVISION
In translocation, which accounts for about 4% of cases of Down syndrome, the total number of chromosomes in the cells remains 46; however, an additional full or partial copy of chromosome 21 attaches to another chromosome, usually chromosome 14. The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome.
What Causes Down Syndrome?
Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
The cause of the extra full or partial chromosome is still unknown. Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome resulting from nondisjunction or mosaicism. However, due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents’ activities before or during pregnancy.
The additional partial or full copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother. Approximately 5% of the cases have been traced to the father.
What is the Likelihood of Having a Child with Down Syndrome?
Down syndrome occurs in people of all races and economic levels, though older women have an increased chance of having a child with Down syndrome. A 35 year old woman has about a one in 350 chance of conceiving a child with Down syndrome, and this chance increases gradually to 1 in 100 by age 40. At age 45 the incidence becomes approximately 1 in 30. The age of the mother does not seem to be linked to the risk of translocation.
Since many couples are postponing parenting until later in life, the incidence of Down syndrome conceptions is expected to increase. Therefore, genetic counseling for parents is becoming increasingly important. Still, many physicians are not fully informed about advising their patients about the incidences of Down syndrome, advancements in diagnosis, and the protocols for care and treatment of babies born with Down syndrome.
Does Down Syndrome Run in Families?
All 3 types of Down syndrome are genetic conditions (relating to the genes), but only 1% of all cases of Down syndrome have a hereditary component (passed from parent to child through the genes). Heridity is not a factor in trisomy 21 (nondisjunction) and mosaicism. However, in one third of cases of Down syndrome resultuing from translocation there is a heriditary compontent – accounting for about 1% of all cases of Down syndrome.
The age of the mother does not seem to be linked to the risk of translocation. Most cases are sporadic – chance – events. However, in about one third of cases, one parent is a carrier of a translocated chromosome.
What Is the Likelihood of Having a Second Child with Down Syndrome?
Once a woman has given birth to a baby with trisomy 21 (nondisjunction) or translocation, it is estimated that her chances of having another baby with trisomy 21 is 1 in 100 up until age 40.
The risk of recurrence of translocation is about 3% if the father is the carrier and 10-15% if the mother is the carrier. Genetic counseling can determine the origin of translocation.
How Is Down Syndrome Diagnosed?
There are two categories of tests for Down syndrome that can be performed before a baby is born: screening tests and diagnostic tests. Prenatal screens estimate the chance of the fetus having Down syndrome. These tests do not tell you for sure whether your fetus has Down syndrome; they only provide a probability. Diagnostic tests, on the other hand, can provide a definitive diagnosis with almost 100% accuracy.
There is an extensive menu of prenatal screening tests now available for pregnant women. Most screening tests involve a blood test and an ultrasound (sonogram). The blood tests (or serum screening tests) measure quantities of various substances in the blood of the mother. Together with a woman’s age, these are used to estimate her chance of having a child with Down syndrome. These blood tests are often performed in conjunction with a detailed sonogram to check for “markers” (characteristics that some researchers feel may have a significant association with Down syndrome). New advanced prenatal screens are now able to detect chromosomal material from the fetus that is circulating in the maternal blood. These tests are not invasive (like the diagnostic tests below), but they provide a high accuracy rate. Still, all of these screens will not definitively diagnose Down syndrome. Prenatal screening and diagnostic tests are now routinely offered to women of all ages.
The diagnostic procedures available for prenatal diagnosis of Down syndrome are chorionic villus sampling (CVS) and amniocentesis. These procedures, which carry up to a 1% risk of causing a spontaneous termination (miscarriage), are nearly 100% accurate in diagnosing Down syndrome. Amniocentesis is usually performed in the second trimester between 15 and 20 weeks of gestation, CVS in the first trimester between 9 and 14 weeks.
Down syndrome is usually identified at birth by the presence of certain physical traits: low muscle tone, a single deep crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. Because these features may be present in babies without Down syndrome, a chromosomal analysis called a karyotype is done to confirm the diagnosis. To obtain a karyotype, doctors draw a blood sample to examine the baby’s cells. They photograph the chromosomes and then group them by size, number, and shape. By examining the karyotype, doctors can diagnose Down syndrome. Another genetic test called FISH can apply similar principles and confirm a diagnosis in a shorter amount of time.
KARYOTYPE OF A FEMALE WITH TRISOMY 21
What Impact Does Down Syndrome Have on Society?
Individuals with Down syndrome are becoming increasingly integrated into society and community organizations, such as school, health care systems, work forces, and social and recreational activities. Individuals with Down syndrome possess varying degrees of cognitive delays, from very mild to severe. Most people with Down syndrome have cognitive delays that are mild to moderate.
Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. With the discovery of antibiotics, the average survival age increased to 19 or 20. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80% of adults with Down syndrome reach age 60, and many live even longer. More and more Americans are interacting with individuals with Down syndrome, increasing the need for widespread public education and acceptance.