Do people realize how lucky they are? Do we as one species realize how vulnerable we are? Do families who's worries revolve around picking "Little Joey" up from practice and what they will do for family vacation this summer realize that they have been blessed with a "normal" family? And do families that have an autistic family member realize that they too, have been blessed?
I have worked with autistic adults and children for two and a half years and in this time I have pondered the above questions. I realize that I grew up in a family that didn't know how fortunate we were to have four happy, healthy children. This realization led me to the topic of this paper: how does having an autistic family member affect a family?
In order to understand the effects this disability has on a family it is first mandatory to understand the characteristics of an individual living with autism. This paper will introduce the history, current theoretical causes and treatments of autism. After doing research to write a concise paper addressing the above topics I realized something was missing; the admiration I feel for the parents of autistic children, the emotions behind working and living with autistic children and the grief of realizing these children are autistic. So, also included in this paper are personal statements and stories of mothers and fathers of autistic children. Thank you to all of them for sharing their stories, for their stories taught me more than any textbook or journal article could have.
The word autism stems from the Greek word autos which means "self." This term was first applied to schizophrenics by Eugen Bleuler, a Swiss psychiatrist. Bleuler used this term to address the characteristic of certain schizophrenics who appeared to have their own style of thinking, autistic thinking. Autistic thinking is the view that the universe revolves around oneself and that the outside world has no effect on the self (Nevid et al., 1994). It was not until 1943 that another psychiatrist used the word autism. Dr. Leo Kanner, a professor at Johns Hopkins University at the time, applied the word autism to a group of children who he observed as having behavioral problems, social problems, communication problems and appeared to be self-absorbed (Edelson, 1995.). It is due to the lack of social interaction that Kanner applied the term autism (Society For The Autistically Handicapped, 1996.). In the fifty three years that autism has been the term of choice for the developmental disorder consisting of avoiding social contact, stereotyped behaviors and slow, or lack of, development of a useful language; much has been discovered. Much more needs to be.
The diagnosis of autism is a difficult one to make. Autism, although one of the largest disabilities to affect children, five in every ten thousand births, is not constant. It affects individuals in varying ways and in varying degrees. This is something I have noticed a great deal. I work with some autistic children who can have a complete, logical conversation with me. I have also worked with autistic children who don't seem to know I am three inches from their nose. A diagnosis of autism is usually made by the child's third birthday but, there are signs from birth that the child is different. An autistic child is more likely to resist affection, arching back and not staying still when being held, than is a child without autism. Autistic children are also usually described as being easy babies to take care of. It is not until the child should be developing language and social skills that parents realize something is different about their child. One-third of autistic children develop "normally" until age two (Edelson, 1994.).
The Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, has changed the diagnosis drastically. The DSM-IV is the first psychologically based text that identifies the varying degrees of autism. Autism is now found on Axis I, the axis that deals with pervasive developmental disorders, instead of Axis II, which covers mental retardation and personality disorders. For a diagnosis of autism to be made six symptoms from three major areas: social interaction, communication and stereotyped behavior patterns must be present before the age of three. There must be at least two symptoms associated with social interaction and one in each of the other areas (Edelson,, 1994.). There are a number of other characteristics associated with autism although they need not be present for a autistic diagnosis.
Features of autism may also include the following: resistance of being touched, ignorance of heat and cold, no sensation of pain, fascination with sounds and tastes, giggling or weeping for no apparent reason, absence of emotions or reactions, self-injurious behaviors and self-stimulatory behaviors (Society For The Autistically Handicapped, 1996.). I observe these associated features of autism on a daily basis. An example of an autistic child's ignorance of heat and cold occurred recently when we were at the beach. The water at the beach was very cold to the touch of my co-workers and yet, a young girl who is diagnosed with autism ran straight into the water with no reaction to the coolness of it. Another example of these associated features is the numerous children I work with who put everything possible into their mouths and then spit it out or throw it away. Almost all of these children smell the object before placing it into their mouth. Self-stimulatory and self-injurious behaviors are the more prevalent of the associated features of autism and will be discussed in length below.
Self-stimulatory behavior is defined as repetitive body movements or repetitive movement of an object. Self-stimulatory behaviors can be split into the five senses. An individual with a visual self-stimulatory behavior is likely to stare at lights, move fingers in front of his/her eyes and flap his/her hands. I have observed this behavior in an adult male living with autism. His hand flapping behavior is usually preceding a self-injurious behavior or an act of injurious behavior towards another person. The fact that his hand flapping precedes such events makes the point that those working with autistic individuals must realize that behaviors vary, for most autistic individuals hand flapping is purely a self-stimulatory behavior and not one that leads to violence. Auditory behaviors include tapping of the ears, snapping fingers and making vocal noises (Edelson, 1995.). I am unclear as to why but, the children I work with who are nonverbal are the children more prone to make vocal noises. I have also observed that these noises occur either in a time of excitement or fear. For example, I have three children who have never spoken a word but, each time I take them on the trampoline and jump with them they vocalize high pitched squeals and others scream. I will have to look into the reason for this. I do notice that tactile stimulation is highly prevalent. Tactile stimulation can include any of the following: rubbing objects with hands, rubbing skin or picking at the skin and scratching (Edelson, 1994.). Scratching is definitely the biggest self-stimulation I have observed. This behavior is a varying one for if a child scratches to the point of bleeding, which most do because they like to watch the blood come out, it is then considered a self-injurious behavior. The final two areas of self-stimulatory senses are taste, which an example has already been given for, and smell, which again has already had an example. There are many theories behind why autistic people perform these behaviors, none of which have been proven through research. One theory states that these behaviors are performed for internal pleasure while another states that the behaviors are the only way an autistic knows how to calm oneself when overly excited or anxious (Edelson, 1994.). The best way to handle a child that is exhibiting a self-stimulatory behavior is to redirect their attention with a more appropriate form of stimulation, such as a book or crayons.
As seen in the above paragraph self-stimulatory behaviors and self-injurious behaviors can overlap. Self-injurious behaviors refer to those behaviors that an individual does to him/herself causing a bruise, red mark or open wound. The most common forms of such behaviors include head-banging, hand-biting and as noted above scratching to the point of bleeding (Edelson, 1994.). One of the most difficult things for me to adjust to at a previous job was the scars on children's hands from biting. Due to the lack of response to pain, autistic individuals will bite their hand out of frustration until they calm themselves, regardless of the depth or size of the bite. Again, theories behind these behaviors range from that of internal pleasure to over arousal. Another theory suggests that these behaviors may be the result of sub-clinical seizures, which is an abnormality in EEG patterns (Edelson, 1994.).
The characteristics of autism are universal but, vary from person to person. Although the characteristics are universal the guidelines for the diagnosis of autism are not universal which is why some countries report higher rates of occurrence whereas other countries, Japan for example, report lower rates of occurrence. Possibly the biggest barrier to joining psychology professionals on the diagnosis of autism is the cause, or more accurately the lack thereof.
The cause of autism remains unknown yet, many theoretical causes exist. Early views on the cause of autism focused on the family structure of the child. It was believed that parents of autistic children must be cold and detached. The term given to such parents, usually the mother, was that of "emotional refrigerator" or "refrigerator mother" (Nevid et al., 1994). There is no evidence to support this theory. Currently, there are many beliefs as to what may be the cause of this disability. The general thought in the psychology field today is that autism may be caused by a variety of coexisting problems (Edelson, 1995.).
There is some evidence to support the claim that autism may be an effect of exposure to a virus. The virus at hand is that of rubella. Studies have shown that there is an increased risk of a child being born with autism if the mother was exposed to rubella during the first trimester of pregnancy. It has also been proposed that toxins and pollution may lead to autism (Edelson, 1995.). This theory has no scientific evidence at this time. The widest held beliefs about the causes of autism appear to be in the fields of genetics and neurology (Society For The Autistically Handicapped, 1996.).
Researchers have identified four possible neurological explanations: over arousal of the reticular system, dysfunction of the limbic system, left hemisphere dysfunction and perceptual inconstancy associated with brain stem dysfunction (Society For The Autistically Handicapped, 1996).
The hypothesis that autism may be due to over arousal of the reticular system has been set aside due to the results of recent studies that do not allow researchers to claim that there is in fact a relationship between arousal and overt behaviors (Society For The Autistically Handicapped, 1996.).
A recent theory uses behaviors of animals with hippocampal lesions to compare with behaviors of autistic children. Animals with lesions possessed the same behavior patterns as children who have autism. Although this similarity suggests underlying mechanisms, there also appears to be behavioral differences which is why this theory is compatible with the current knowledge of autism (Society For The Autistically Handicapped, 1996.).
The left hemisphere of the brain deals with language and some aspects of cognition. The fact that the areas of language and cognitive thought are affected by autism has led researchers to the theory that the limbic system of those living with autism may have impairments. The only fault with this theory is that because the onset of autism is at a young age the right hemisphere of the brain should compensate for what the left side does not accomplish but, this does not appear to be the case (Society For The Autistically Handicapped, 1996.).
Finally, the theory that those living with autism have an inability to regulate sensory input, which affects ones view of external reality, is known as perceptual inconstancy. Again, this theory has not been able to show the nature of these instabilities (Society For The Autistically Handicapped, 1996.).
Although there is no or little evidence for the neurological theories concerning the cause of autism, there is some evidence that points to genetic causes. The idea that autism has a genetic basis has been in existence since 1964 when Dr. Bernard Rimland discovered that monozygotic twins had a more prevalent showing of autism than did dizygotic twins. Since 1964 this finding has been confirmed by other researchers. One supporter of the genetics theory is University of California Los Angeles (UCLA). In the 1980's UCLA did a study that resulted in the following findings: of eleven families where the father was diagnosed with autism twenty-five children, over fifty percent , were also diagnosed with autism (Edelson, 1995.). The general population only has an incidence rate of five autistic children born in every ten thousand births, thus giving further evidence to the genetics theory.
The remaining two genetic theories; that of a genetic mutation and a genetic predisposition, I feel can be integrated together. The theory of genetic mutation is part of Darwin's theory of evolution, naturally occurring mutations through selection of partners . Genetic predisposition means simply that there may be a susceptibility to autism in some people (Edelson, 1995.). In combining these two theories it is my belief that if genetic mutation is due to the selection of a partner and then a child is produced who has been diagnosed autistic, that there must have been a genetic predisposition to autism for the child due to the genes of the parents. Therefore the predisposition is not in the child's genes rather, it is the combining of the parents genes. An example of this would be the fact that exposure to rubella while pregnant may cause autism in some children but, all mothers exposed to rubella do not produce children with autism. There must be a missing link as to why some children do, and some don't, have autism; the genes of the parents and their predisposition to autistic characteristics. Although this is just my theory, it has been shown that there is evidence of genetics playing a part in the cause of autism. I look forward to the day, if there is one, when the true cause of autism is discovered.
Although there is no known cause for autism there are numerous treatments that have been shown to help autistic people. Again, there are varying degrees of autism therefore the treatment given to an individual may work for him/her but, may not work for another. Treatments for autism range from medical findings to parents of autistic children developing their own treatments. Some therapies are: Anti-Yeast Therapy, Dimethylglycine (food substance) Supplements, The Son- Rise Program and Higashi (Society For The Autistically Handicapped, 1996.). Whereas the Anti-Yeast and the Dimethylglycine therapies focus on medical findings and/or vitamins to help modify the behaviors of an autistic individual, the Son-Rise Program and Higashi, which means Daily Life Therapy in Japanese, focuses on the roles that the people around an autistic person have in modifying behaviors (,A HREF="http://www.rmplc.co.uk/eduweb/sites/autism/autism5.html">Society For The Autistically Handicapped, 1996.). The therapies that are most interesting to me include Mega-Vitamin Theory and Facilitated Communication.
Dr. Bernard Rimland researched the claims from parents that certain vitamins and foods affected their autistic child's behaviors (Society For The Autistically Handicapped, 1996. Treatments). It was concluded that Vitamin B6 is an effective treatment for forty-five percent of autistic people. The taking of vitamin B6 helps to improve: speech, sleeping patterns, lessened irritability, attention span and decrease self-stimulatory behaviors (Society For The Autistically Handicapped, 1996.). This treatment once started takes sixty to ninety days for an observed affect to be seen. I know some children who are currently on this from of treatment. I have only experienced the full treatment with one child and there has been a noticeable difference in self-stimulatory behaviors and mostly with attention span. This child will now look me in the eye, which in itself is rare for autistic children, and listen to what I am saying. I know that the child is listening because the actions taken are what I have instructed him to do. I can see why this theory would be a blessing to parents.
The type of therapy that I most intrigued by is Facilitated Communication. I first heard of this therapy in 1992. Facilitated Communication is a method of helping an autistic individual express him/herself by giving physical support to an arm or fingers, enabling the individual to use a typewriter, picture board or alphabet board. This form of therapy is very controversial because of the fact that there is a facilitator and that the autistic individual does not do this on his/her own. When using this form of therapy it has often been typed by the autistic individual that he/she is not retarded or stupid but intelligent (Society For The Autistically Handicapped, 1996.). Through my own research of this treatment method, I have also come across stories where the autistic individual has expressed anger because he/she understands everything happening in daily life yet, can not express thoughts or feelings. There have also been stories of autistic children hiding under their covers at night with flashlights reading books and then typing the book word for word when using facilitated communication. This amazes me! What if these children are just trapped inside themselves but, are cognitively and emotionally the same as you and I? Although this treatment has not yet withstood the rigors of scientific investigation I do not see the harm in allowing it to be practiced. If it does in fact prove to be a scientifically sound treatment then the world of autistic individuals and their families will forever be changed.
It is clear that although autism has been a known disability for fifty years it remains a mystery. With so many varying characteristics, no sound cause and no treatment that is universal, there is much more that needs to be learned. Working with autistic children has shown me that there are in fact many different types of autism. Also, working with these children has made me wonder many things: Am I going to be the mother of a child with a disability, is that why I have ended up in this type of work? How do the parents deal with having an autistic child? Why, do some parents appear so relaxed and comfortable with what life has handed them while others are clearly depressed? How does having an autistic sibling affect brothers and sisters? Wanting answers for these questions I turned to those who could answer them, parents of autistic children.
Donna Reagan, the mother of an autistic child, touched me with her story. David, her son, is now twenty years old. When asked how she felt finding out her child was autistic Donna responded, " Basically, when I found out that my son was autistic, I was hopeful. Since then I have moved pretty much into heartbreak and despair. I imagine the next step will be acceptance. It seems to me that this is like the grieving process and we move from one step to another, it just takes longer when the object of your grief is living." Donna has experienced other effects of having an autistic child.
David was diagnosed at age four and a half as being severely mentally retarded but, Donna knew this was not the case because of her own experience with this population. Donna was labeled as being in denial. This is an example of how much more needs to be learned about the characteristics of autism and as previously discussed the DSM-IV has taken the first step in clarifying the varying degrees of the disability.
Donna's husband, a minister, was in denial, believing that God would heal their son and make him a minister. Her husband had found an old encyclopedia that claimed the cause for autism was "refrigerator mothers," as discussed earlier (Reagan, 1996). This lead to the physical, emotional and mental abuse of Donna. And the physical abuse of David at the hands of his father. Donna moved her family away from the man that was once her husband. It is not uncommon for parents of an autistic child to divorce, most do with-in the first five years of the child's life.
Atop of what was going on with her marriage and own life , Donna still had to care for a hyper autistic child. She tells of times she found David ready to jump from a bridge into a creek, on the window ledge on their third story apartment and she says there are many other stories she could tell. David's safety was her biggest concern, with reason.
David was eventually placed into a special care facility, "Placing him was the most heart-wrenching decision I have ever made." David has been in placement care for ten years now. His father has seen him once. In two years he will again move to other placement. Donna's biggest worry, who will care for David when she is gone? "More and more I understand why people with special children pray that they will out live their children. I have begun to pray that prayer as well."
Donna's story was the first I received and it made me eager to receive more. I then received an email from Suzanne, the mother of a seven year old autistic girl. Before I tell Suzanne's story I would like to point out a common theme I have found among parents of autistic children, those who's children are young appear to be hopeful and optimistic whereas those who's children are older seem to realize that autism is a lifelong disability with many hardships. The most common theme I have found though is this; what will happen when I, the parent, am gone. Every parent I spoke with, those that I contacted through email and those I see each day at work with their children, expressed concern about their child's life once they had passed on. Suzanne expresses this very well, as you will see.
Suzanne says that the diagnosis of her daughter was not a surprise, because the word had been thrown around so much in all of the tests that were being done but, she does say that, "It is certainly a life sentence." Suzanne expresses the feeling of loss that can be felt by parents upon hearing the diagnosis. "No longer are there hopes for the child to accomplish all that the parents could not accomplish; no medical school, no academic scholar." Due to the stress of raising an autistic child Suzanne and her husband sought counseling for six months and have now learned to work through all of the emotions and responsibilities of having a special child together.
Suzanne sounds tired and still in a stage of sorrow due to her daughter's diagnosis. She explains how the family doesn't go out much, "It is very tiring to have this kind of kid." Her and her husband assume that their daughter will live with them until they are gone and yet, she speaks of the hope that maybe her daughter will be able to buy her own groceries, pay taxes and get a job she will enjoy. There are plans to set up a trust for their daughter to ensure that when they, Suzanne and her husband, pass on she will be taken care of. Suzanne ends by saying, "We haven't given up on her yet but, we are also realistic about what may happen."
I would like to point out a couple that I know through work. Their daughter is nine years old and I have taken a liking to her. She amazes me each day and I look forward to what she will teach me next. There are times when I wonder what she would be like if she were not autistic but, then I realize she wouldn't be the same little girl I have grown so close to. I admire her parents greatly for their outlook on her disability. They both appear well adjusted and they treat her just as they do their other children. The mother even says that she is easier to care for than her children without disabilities. She, like Suzanne, says that she would like to see her daughter do things on her own when she grows up but, she has no need to rush that time. As the mother of an autistic child, she says her daughter is her best friend, they do everything together. I know, from working with her daughter that she is not of the highest functioning autistic children but, she is not the lowest either. Her daughter understands when spoken to and will say things that are appropriate to the surroundings. I can not express how wonderful it is to work with this child. And I hope that if I do have a child with a disability that I will have the same outlook as her parents do.
Most of the research that has been done concerning autistic families is how siblings are affected. In a study done by Royers and Mycke in 1995, it was found that siblings of autistic children had a fair understanding of the disability and this finding was independent of age. Also found was the fact that children who have an autistic sibling rate their relationship with their brother/sister better than two siblings of which neither has a disability.
From what I have seen at work, the siblings of the autistic children take responsibility for their brother/sister and at the same time do not truly understand why their brother/sister can't do such things for him/herself. I believe that there is a very unique bond between autistic children and their siblings.
Autism is a lifelong, developmental disability. The characteristics of the disability; little or lack of speech development, avoiding social contact or awareness and routines of behaviors are not experienced in the same degree for everyone living with autism. The lack of a single identified cause for autism leaves much to be discovered in the field. Theoretical causes, such as neurological and genetic, may prove to be a link to the true cause of the disability. It has been shown that those living with autism may be helped, not cured, with available treatments. Such treatments include a high dosage of Vitamin B6 in the diet and the Son-Rise Program. A controversial treatment, Facilitated Communication, may allow autistic individuals a chance to communicate with the rest of the world without becoming frustrated at the inability to communicate.
Parents of autistic children deserve all the support and help
they can handle. By hearing Donna and Suzanne's stories I have
learned more about autism and the range of emotions that are felt
by parents than any textbook could of taught. Donna's story of
basically having to start a new life due to having an autistic
child and all the hardships she has gone through in trying to do
the best for David. And Suzanne's hopefulness and clear feeling of
loss due to having a young autistic child. I am thankful for all
of the children that I work with and I treasure each day I spend
with them and all they teach me. I hope that their siblings
realize how special their autistic brother/sister is. Doing this
paper and the research involved in it I have come to realize that
I am blessed for having known each and every one of the autistic
individuals I work with, for they may live in a world all their own
but, every so often they let you in and that, that is a blessing.