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What is Autism?



     Autism is a life-long developmental disability. It prevents people from properly processing information the way most people do.

     They have trouble processing visual and auditory information and using it to make sense of the world. Sometimes they may have over or under sensitive senses. For example, they may feel the slightest touch on their bodies as pain, or they may not feel anything at all, even when they are being subjected to what to what would cause another person extreme physical discomfort.

They may also have extreme sensitivity to light and sound. If someone is speaking very softly, it may seem to the autistic person that they are being yelled at, for example.

     This inability to properly process what they see, hear, taste, touch, and smell is what causes them so much anxiety, fear, and confusion. They aren't able to understand and make sense of the world. This is why many people with autism resort to using repetitive behaviors such as hand-flapping or spinning. It allows them to escape a little from the too many signals that they are being over-loaded with. They also use them because being over-stimulated causes a lot of extra energy, which they have to release.

     These are not the main characteristics of autism, though. Although many autistic people have these difficulties, their greatest difficulties lie in communication and social interaction.

They have trouble using language correctly; some never learn how to speak at all. Some of them are late speakers. The curious thing is that when they do start speaking, many of them go right into full sentences. This is because, to many of them, it simply does not occur to them that they can speak - this is how unaware they are of the purpose of communication with other people.

     When they do use language, it is often incorrectly used. They attach a whole phrase to a situation. For example, if they have been asked "Do you want a cookie?" when being offered one, they will connect this phrase to getting a cookie. So the next time they want one, they may ask for it by saying "Do you want a cookie?" instead of "Can I have a cookie?" They have difficulty understanding the meanings of individual words.

     Speech is taken very literally. Words only mean what they appear to mean. They cannot tell anything else from eye contact, voice intonation, or other body language.

     Another reason that they have such trouble understanding other people is because they cannot understand other people's states of mind. To them, what they know, everyone else must know. This is why it is so frustrating for them, because when they want something, they assume that everyone else must know it and is being cruel by not giving it to them.

     They are also lacking in common sense, which is understandable, since "Common sense, amongst other things, implies a set of background assumptions held by all members of a community".¹

     Autistic children prefer to be alone. They do not understand socialization, nor do they need it. They are perfectly content without having to interact with other people.

     Other people represent change for them, because another person is so unpredictable. One never knows what they're going to say, and they have all these social rules that they don't understand and that they cannot interpret, which frustrates them. Many of them aren't even aware of the existence of these rules. They just do not have, initially, any motivation to leave "their world" and come out into ours. Why risk unpredictability when you can have safety?





Questionnaire #1 - Results (out of 20 questionnaires)



1. Are you uncomfortable during social situations (a party, group of people, etc.)?

a) often - 15%

b) sometimes - 55%

c) rarely - 30%



2. How do you respond to change?

a) bothers me a great deal - 0%

b) bothers me to a certain extent - 75%

c) doesn't bother me at all - 25%



3. How would you describe your communication with other people?

a) strong; able to communicate well with others - 50%

b) have some difficulty communicating with others - 45%

c) have great difficulty communicating with others - 5%



4. Do you find that you are narrowly focused on only one area of interest?

a) very much so - 5%

b) somewhat - 20%

c) not really - 75%



5. Do you find it difficult to see or understand the subtle social cues that are given during conversations or other interactions with people?

a) very much - 5%

b) somewhat - 20%

c) not really - 75%



6. Have people ever told you that you don't have a sense of humor or that you take things too seriously?

a) often - 0%

b) sometimes - 40%

c) rarely - 60%



7. Do you have difficulty understanding why a person has said or done something?

a) often - 0%

b) sometimes - 55%

c) rarely - 45%



8. Do you do things that have little or no meaning to anyone but you, but you do them anyway because they have become a pattern in your life (like picking up the phone and listening for the dial tone, many times throughout the day)?

a) often - 15%

b) sometimes - 40%

c) rarely - 45%



     In this first questionnaire I handed out, I asked people if they had some of the characteristics of autism, like difficulty communicating with others, repetitive behaviors or response to change.

     I found that there were a few people which displayed some of the characteristics of autism, like the repetitive behaviors (55% said they did this sometimes or often), being uncomfortable in social situations (70% said often or sometimes), and being bothered by change (75% said it bothered them to a certain extent).

     No one said that change bothered them a great deal, that they were told they took things too seriously, and that they had difficulty understanding why a person has said or done something, and only one person said that they had trouble understanding social cues.

     From this I concluded that things like feeling anxious in social situations is common amongst many people, but that not being able to interpret social cues like eye contact etc., not being able to tolerate change, and not being able to understand other people in general is something that is more characteristic of people with autism. They may feel anxious as well, but only because they are unable to understand, or have great difficulty with these things.

     So while many people may mildly have one or two of the symptoms of autism, it is necessary for all to be present, especially a lack of social reciprocity and knowledge of the basic rules of socialization.





What causes autism?



     Anyone can get autism, no matter the racial, social, or ethnic boundaries. Family income, lifestyle, and educational levels do not lessen or increase the chances of a child having autism. Autism occurs four times more often in boys than it does in girls.

Autism is a physical disorder; it cannot be "caused" by any external forces such as the mother not properly bonding with her child, which was the accepted theory when autism was first recognized as a disorder.

     Autism is caused by abnormalities in brain structures or functions. There are many things that can interfere with normal brain development. Cells may migrate to the wrong place in the brain, or if there are problems with the neural pathways, some parts of the network of communication may fail to work properly, and this can cause problems with coordinating information from the senses, thoughts, feelings, and actions.

     In a study of high-functioning autistic children, done by the National Institute of Mental Health, it was found that the part of the brain which directs our emotional responses was impaired, but that the part which makes it possible to make use of recent experiences and information was not.

     Researchers are investigating the theory that autism can be inherited. For example, identical twins are much more likely than fraternal twins to both have autism, because they have the same genetic makeup. Also, parents with one autistic child are slightly more at risk for having another child with autism.

     Autism is not due to one particular gene, though. Some scientists believe that it is a segment of genetic code which is irregular, and that in most people, it may only cause minor problems, but that in certain conditions they may interfere with the brain development of the child and result in autism.²

     Since autism is a spectrum disorder, (which means that there are many different symptoms which can occur in different combinations, from mild to severe), autistic children, when compared, could be completely different. This suggests that maybe autism is not one single disorder, but that it covers several different ones, each caused by a different problem in the brain.





There are several disorders which all fall under the "autistic spectrum":



Autistic Disorder

- impairments in social interaction, communication, and imaginative play prior to age 3 years. Stereotyped behaviors, interests, and activities.



Asperger's Disorder

- characterized by impairments in social interactions and the presence of restricted interests and activities, with no clinical significant general delay in language, and testing in the range of average to above average intelligence.



Pervasive Developmental Disorder - Not Otherwise Specified

- (commonly referred to as atypical autism) a diagnosis of PDD-NOS may be made when a child does not meet the criteria for a specific diagnosis, but there is a severe and pervasive impairment in specified behaviors.



Rett's Disorder

- a progressive disorder which, to date, has occurred only in girls. Period of normal development and then loss of previously acquired skills, loss of purposeful use of the hands replaced with repetitive hand movements beginning at the age of 1-4 years.



Childhood Disintegrative Disorder

- characterized by normal development for at least the first 2 years, significant loss of previously acquired skills.



(American Psychiatric Association 1994)





How is autism diagnosed?



Diagnostic Criteria for Autistic Disorder*



A. A total of at least six items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):



(1)Qualitative impairment in social interaction, as manifested by at least two of the following:



(a)marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(b)failure to develop peer relationships appropriate to developmental level

(c)a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

(d)lack of social or emotional reciprocity



(2)Qualitative impairments in communication as manifested by at least one of the following:



(a)delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)

(b)in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

(c)stereotyped and repetitive use of language or idiosyncratic language

(d)lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level



(3)Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:



(a)encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal wither in intensity or focus

(b)apparently inflexible adherence to specific, nonfunctional routines or rituals

(c)stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole body movements)

(d)persistent preoccupation with parts of objects



B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.



C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.



*Source: The American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Washington, D.C., American Psychiatric Association, 1994.



¹Frith, Uta: Autism: Explaining the Enigma, Cambridge: Blackwell, 1992; pg. 32



²http://www.nimh.nih.gov/publicat/autism.cfm



  

What can be done?

     There are many different therapies used to treat autism. While there is much greater chance of long term recovery if the treatment is started while the child is still young and the brain is still developing, it is never too late to begin treatment.

     There are some therapies which focus on developing the skills of the autistic child and replacing their dysfunctional behaviors with ones that are more appropriate for functioning in society.

     Another way that autistic children are taught social skills and behavior is by placing them in a learning environment where they are stimulated, and their needs are met. One way that is easier for autistic children to learn is by giving them very structured tasks and activities, with steps to follow so that all that they need to do does not get confused.

     Another method that seems to work is consistent reinforcement of the behaviors that are trying to be taught to the child. Learning has to be an on-going process, and parents should be in close-contact with the teachers and therapists so that they know what their child are being taught in their specialized programs, and so they can reinforce the same behaviors at home. This way the autistic child will have consistent reinforcement in both environments.

     Two approaches which seem to work well are the developmental and the behaviorist.

     The developmental approach works by using consistency and structure, as well as appropriate levels of stimulation for the mental level of each individual child.

     The behaviorist approach works by rewarding the autistic child whenever they do a behavior that is wanted by the teacher or therapist. They can be rewarded not only with cookies or juice, but with a smile, hug, or words or praise.

     There are also a number of non-standard therapies out there which attract parents who are desperate to try anything to help their child.

     One of these is holding therapy, in which the parent hugs the child for a long period of time, in an attempt to calm the child and forge a bond between mother and child, even if the child resists. Although there is no scientific evidence to support this, many parents have been attracted to the idea that love is all they need to "cure" their child of autism. This is an unhealthy idea, because, while not being true, it also implies that the child "got" autism because of their mothers inability to bond with him/her in the first place, which is also not true.





Do medications help?



     There are some medications which are available to aid in the treatment of autism. Although it is not possible for any medication to correct the structure of the brain and thereby cure autism, there are medications which can be used to control some of the more debilitating symptoms of people with autism.

     People with obsessive-compulsive disorder (OCD) suffer from one of the symptoms of autism - repetitive behaviors that they cannot control. Since they are treated with clomipramine, it was decided to try it on autistic children, with positive results i.e. the repetitive behaviors decreased.

     Drugs like Ritalin were also used to help control the hyperactiveness seen in some children with autism.





Can autism be outgrown?



     Autism cannot be outgrown. It is a condition that people have to live with their whole lives. But, with treatment and therapy from an early age, autistic children can learn to live with their symptoms, and how to find ways to work around them, and eventually lead happy, independent lives.





How do families cope?



     Raising a child with any sort of disability can definitely put a strain on the relationship between parents. Parents have to learn to accept the fact that they do not have a "normal" child as they had expected, but that they can still experience the joys of parenting. They must also be told that it is okay for them to feel disappointment and grief, that these are normal emotions and that they should not feel guilty about them. Parents should also be reassured that, yes, it is hard to love a child who despite being given constant love and attention never responds.

Sometimes it can be difficult for parents to deal with other members of the family, because often they do not understand the difficulties of someone with autism, and may try to provide their own advice without really knowing the specific needs of the child.

     Parents must also realize that they need to take time for themselves, and that it is okay to do this. Their lives do not need to revolve around the autistic child, and parents should take some "time-out" every once in awhile, relax, pursue their own interests.

     A big help to parents is to find a support system and be in contact with other parents of children with autism, so that they do not feel alone. Parents who feel supported are less depressed, anxious, and angry.

     Having a brother or sister who is autistic can also be very confusing and frustrating for the other children in the family. They may feel jealous that their brother or sister is getting so much attention from their parents and also from everyone else. Their frustration can be heightened by the fact that their sibling may not want to play with them. Some siblings of autistic children may also have a fear that they will "catch" autism, or grow up to have autistic children. There are also others who may try and compensate for their sibling, and try to be "perfect", so as not to cause their parents any more trouble than necessary.

The children in the family must be reassured that they are still loved. They can be shown how to play with the autistic child, and told that their brother/sister isn't rejecting them personally. Most children are eager to learn how they can help, and may become more tolerant and compassionate towards other members of society who have difficulties in some way.

     Parents should take the time to spend time with their other children apart from the autistic child, so that they can grow and develop into their own person without having to constantly try to help their brother or sister.

     Above all, the difficulties of autism should be explained to all members of the family, and the best ways to help should be described so all family members can feel informed and know how they can help.

     Many parents of autistic children report that even though the challenges that they face in raising children with autism are very difficult and stressful, they still feel the same sort of joy that other parents feel whenever their child overcomes a hurdle. People with autism have a unique way of seeing the world, and they can teach their parents, other family members, friends, and anyone with whom they come into contact with, how to see the world through different eyes.



Questionnaire #2 - results(out of 22 questionnaires)



1. Autism is:

a) a learning disability - 14%

b)a developmental disorder - 68%

c) a disease - 18%



2. People with autism are capable of learning.

True - 100%

False - 0%



3. People with autism cannot form loving attachments towards others.

True - 5%

False- 95%



4. Children with autism withdraw from the world because of their mothers inability to bond with them when they are first born.

True - 9%

False - 91%



5. Hand flapping, continuously spinning objects, or rocking are major characteristics of autism. If a child does not display these characteristics, they cannot be autistic.

True - 14%

False - 86%



6. Autism occurs more often in boys than in girls.

True - 77%

False - 23%



7. All autistic people are at least mildly retarded.

True - 33%

False - 67%



8. As a person grows older, he outgrows autism.

True - 18%

False - 82%



9. All autistic people have some sort of "savant" skill, such as playing the piano, memorizing phone books, etc.

True - 45%

False- 55%



10. The only way to cure autism indefinitely is if the child continuously receives love and support, especially from it's mother.

True - 23%

False - 77%



     Although there are still some lingering beliefs about autism in the general public, the majority of people that know what autism is understand, more or less, how it manifests itself, and do not believe the misconceptions that are out there, which is heartening.

     One thing I found sort of interesting was that most people to whom the questionnaire was given answered that autistic people were capable of forming loving attachments towards others (only one person answered otherwise), but on the website of the National Institute of Mental Health, they stated that they are "unable to form emotional bonds with others", which is untrue. They may have difficulties, yes, but they are not unable.

     There are also still a number of people who think that most autistic children have IQs below 100. Even though the statistics say that 80% of them are retarded, it is lower than that. There is really no way to test them without language, since their way of communicating is so much different than ours.

     The only misconception that really seems to exist is that many people still believe that one of that characteristics of autism is to have some sort of "savant" skill, which is not true. These types of skills are rare and should not be thought of as one of the main focuses of people with autism, because it makes them seem more like a curiosity than just someone who has difficulty processing information.

     While talks with parents of autistic children have shown that there are still many people out there who do not understand the difficulties of autism or do not know how to recognize them, the results of these questionnaires show that not all people are like this and that the public is starting to become informed and aware of autism and how to best deal with it.





Bibliography...and thanks



Barron, J., and Barron, Sean; There's a Boy in Here; New York: Simon and Schuster, 1992



Frith, Uta; Autism: Explaining the Enigma, Cambridge: Blackwell, 1992



Grandin, Temple; Thinking in Pictures and Other Reports From My Life With Autism; New York: Doubleday, 1995



Matthews, Joan, and Williams, James; The Self-Help Guide for Special Kids and their Parents; London: Jessica Kingsley Publishers, 2000.



Maurice, Catherine; Let Me Hear Your Voice: A Family's Triumph over Autism; New York: Knopf, 1993



Park, Clara Clairborne; The Siege; New York: Harcourt, Brace, World, 1967



Puluszny, Maria J., M.D.; Autism: A Practical Guide for Parents and Professionals; New York: Syracuse University Press, 1979



Williams, Donna; Nobody Nowhere; New York: Times Books, 1994



Williams, Donna; Somebody Somewhere; New York: Times Books, 1994



Williams, Donna; Autism: An inside-out approach; London: Jessica Kingsley Publishers, 1996



http://members.tripod.com/~KindTree/Zachary_Carr_on_Autism.html



http://www.autism_society.org/index.html



http://www.nimb.nih.gov/publicat/autism.cfm





Thanks to everyone from the "Life-Autistic Spectrum" (aol) chatroom, for putting up with my questions, letting me "listen" in, and print out conversations.

A special thanks to Kris, Mary, and Kelly. You guys are awesome!