Monday, March 19, 2012
Feedback
After 24 hours as a blog and over two hundred visitors, I feel it is time to ask for some initial feedback to better support parents of exceptional children. Please take the time if you are able to let me know what topics you would like to see covered or to ask questions more specific to the needs of your own child. Thank you to those who have visited the blog so far. I look forward to collaborating with readers in development of a useful and objective resource for parents, caregivers, and others who seek to help exceptional children achieve happy, healthy lives.
Autism
I have worked with many individuals with autism over the past 16 years working as a special education teacher and school psychologist. Of all the individuals I've worked with over the years, it has been the children with autism that have most impacted my view of the world and brought my the most joy. People who speak a second language know that a person's reality is shaped by the language that they speak. The words and grammar give a structure that leads to a common understanding of the world. In that same sense, the neurological differences of individuals with autism lead them to experience and interact with the world in a manner that is highly different than individuals without autism. Through my work with individuals with autism I have come to fully understand the relative nature of reality and that my own reality is limited by my own cognition and communication. Through that realization I have come to the conclusion that it is crucial to acknowledge and accept the manner in which each individual experiences their reality before I determine what help they need and what to do to help them. I also realize the value of such diverse realities in helping us all develop a commonly accepted reality that reflects the richness of all our varied perspectives.
The complexities of autism make it difficult to know where to begin, but some brief background on the disorder is helpful in understanding our understanding of the disorder at present and development of treatments and interventions.
Background:
While many would begin by describing Leo Kanner's work with individuals with autism in the 1950s, I will begin at the point in which our modern definition of autism was developed. Wing and Gould (1979) have been credited with developing a definition of autism that is characterized by a triad of deficits in communication, deficits in social interaction, and repetitive stereotyped behaviors. This research led to the initial American Psychiatric Association's1980 DSM-III definition of autism that serves as the standard for medical diagnoses of autism. The current DSM-IV-TR places autistic disorder under the umbrella of autism spectrum disorders along with Asperger's disorder, pervasive developmental disorder not otherwise specified (NOS), Rett's disorder, and childhood disintigrative disorder. The triad of communication deficits, social interaction deficits, and repetitive stereotyped behaviors are important to our understanding of what autism is and how it impacts individuals with the disorder.
Early indicators of potential autism:
Early indicators of potential autism that parents might observe may include such behaviors as colic, arching of the back, delays in speaking first words and/or sentences, failure to acquire joint attention, sensitivity to textures/clothing/noise, obsession with parts of objects, repeatedly spinning and twirling body or objects, hand flapping, difficulty maintaining eye contact, obsessions/playing with water/edges/lights, failure to develop the ability to engage in cooperative play, obsession with sniffing/smelling people or objects, impulsivity, difficulties with attention, difficulties with transition, and unpredictable and/or explosive behavior. Any combination of these behaviors or additional behaviors not listed may be present. The key to understanding your child's behavior may be an indicator of autism is to consider the behaviors in the context of the overall definition of autism. Do the behaviors indicate concerns in the areas of communication, social-interaction, and repetitive stereotyped behavior. For example, both an individual with autism and an individual with apraxia have difficulties with communication, but the individual with autism will also concurrent deficits in social interaction and repetitive stereotyped behaviors. Also, delays should be considered in relation to overall development.
Cognitive Theories Related to Autism:
The cognitive impact of autism is highly individual, but some general theories have been proposed to describe the impact of the disorder on cognitive functioning. Researchers such as Uta Frith and Simon Baron-Cohen has proposed that individuals with autism lack a "Theory of Mind". Theory of Mind is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires and intentions that are different from one's own. They propose that individuals with autism have a difficult time understanding the perspective of others. This has been experimentally measured using the "Sally-Anne Test". In this experiment, a child is given a doll named Sally-Anne who has a basket with an object inside. The experimenter opens the basket so that the child, the experimenter, and the doll can see that there is an object inside. The doll is then taken away, but the basket is left behind. The experimenter then removes the object from the basket while the child observes. Finally, the experimenter brings the doll back and asks the child what Sally Anne thinks is in the basket. Children with a Theory of Mind will state that Sally Anne thinks the object is still in the basket because she was not present to see it removed. Children with autism, however, will state that Sally Anne thinks the basket is empty because they assume that Sally Anne's perspective and belief is the same as their own.
"Weak Central Coherence Theory" is another cognitive theory advanced by Uta Frith. The premise of this theory is that individuals with autism have a tendency to gravitate toward the analytic (division into elements) and away from the gestalt (concept of wholeness). Difficulty grasping the gestalt of a given social situation or the gestalt of the combination of the various pieces of a facial expression (e.g. difficulty differentiating between a happy facial expression and an angry facial expression that may have different positions for the lips and mouth, but have little observable change in the eyes or other parts of the face.) Evidence for this cognitive preference has been asserted via the demonstrated strength demonstrated by individuals with autism on the Embedded Figures Test. A preference toward the analytic fits with some behaviors observed with autism such as spinning the wheels on a toy car rather than playing with a toy car in an imaginative manner, difficulty reading facial expressions, and difficulty understanding social situations.
The cognitive theory of an "Executive System" refers to higher level cognitive processes such as planning, organizing, initiating, inhibiting, working memory, attention, etc. It has been proposed that individuals with autism have deficit in executive functioning. These deficits fit with many behaviors we see exhibited by individuals with autism. For example difficulties with transition can represent a difficulty either initiating a behavior or inhibiting a behavior.
When considering the cognitive processes of an individual with autism it is more useful to think of theories like these in terms of their relationships to each other and in terms of the overall cognitive approach to a given task of an individual with autism. In consideration of these theories and our experience with behaviors related to autism we can could describe a cognitive approach to a given task as follows:
Example: A child with autism is attempting to understand the social expectations of a game of Uno with three peers at a small table. The child may be having difficulty with taking turns due to problems inhibiting the response placing a card (Executive Functioning Deficit). The difficulty taking turns may also be due an inability of the child to understand the beliefs/desires of others and therefore unable to understand why peers would not want him to play a card when the child wants to (Theory of Mind). Another possible explanation would be that the child cannot understand to whole concept of playing a game and the relationship between taking turns and making the game progress (Weak Central Coherence Theory).
Assessment of Individuals with Autism:
Assessment of individuals with autism often occurs initially before enrollment in kindergarten, but may potentially occur at any time during childhood. An initial assessment may be made by the child's pediatrician, neurologist, psychiatrist, clinical psychologist/LCSW/Psychiatric Nurse Practitioner, school psychologist, or autism specialist through the healthcare system or education system. Like all assessments of mental health disorders, there is no single method for conducting the assessment. Individuals in the healthcare system use the DSM-IV-TR definition of autism to guide their assessment and engage in a process of differential diagnosis to establish the diagnosis. In the educational system, the federal definition of autism (adapted at the state level) drives the process of identification of eligibility and a diagnosis is not made. In all cases, the breadth and depth of an assessment varies between practitioners. It has been my experience over the years that there is no one type of practitioner that produces consistently better assessments.
A typical assessment should begin with the collection of background information, including a developmental and medical history. Existing records, assessments, and other data will also be reviewed and relevant information included in the assessment. Often times, this will include structured interviews for gathering indirect assessment data or completion of behavioral assessment questionnaires. The child will also be observed in natural environments and across settings. Direct assessment may also be used in which the child will directly participate in testing activities with the examiner. Information will be gathered across all areas of development, with a focus on the child's functioning in the areas of communication and social-emotional functioning. Once the information has been gathered, the examiner will interpret the results and generate a report to share with you. In the healthcare system, the examiner will provide a diagnosis to you. In the educational system, a team of individuals will meet with you to review the results and determine as a team (with your input) as to whether your child is eligible to receive special education services. If the child is eligible, you will be then made an offer of Free and Appropriate Public Education in the form of an Individual Education Program (IEP) that you will be given the opportunity to accept or reject.
Interventions:
A number of interventions are available for addressing deficit skill areas and the behaviors associated with autism. They can be broadly categorized into medical, psychological, educational, and alternative/other interventions. Under medical interventions, we find pharmacological (medicine) interventions, occupational therapies, and dietary and supplemental intervention guided by a medical professional. Under psychological interventions, behaviorism is the primary theoretical construct under which interventions are generated. Under educational interventions, we find a broad range of interventions based on varying degrees to a broad range of psychological theories. Again, however, most of the educational interventions draw primarily upon aspects of behaviorism.
When considering interventions it is important for parents to think about the individual needs of their child as based on objective assessment data. Once an area of need has been recognized, an intervention can be developed that best meets the child's individual needs. While most people tend to discuss interventions for autism at the program level (e.g. TEACCH, ABA programs, etc.), I feel it is more important to understand interventions in terms of their theoretical foundations. No one program or approach is superior in all cases and drawing interventions from different theoretical foundations is necessary to optimize interventions between different students, as well as interventions particular to a individual student.
Areas of controversy:
The etiology (cause/s) of autism has not yet been conclusively determined. In recent years there has been concern regarding vaccines being a potential cause of autism. Current research indicates that no relationship can be established between vaccines and autism. The original research that indicated a correlation between vaccines and autism was published in the premier British Medical Journal, The Lancet. This research was later found to be fraudulent and retracted from the Lancet. Unfortunately, by the time this was fully addressed it had been spread by the media as a potential cause to the extent that it became taken as fact. This is part of the unfortunate process that can occur when the media reports research that has not been replicated and/or is correlational, but lacks an explanation of a viable mechanism of causality. Regarding the etiology of autism, there is research to support the hypothesis that it is likely that a combination of genes predisposes one to develop autism and some type of environmental insult during the gestational period (possibly during the first 14 to 20 months of development) triggers the disorder. This results in changes in brain development that lead to the deficits of executive functioning, communication, social interaction, and the repetitive stereotyped behaviors. The environmental insult may be viral in nature or perhaps a toxin of some sort. Should this be the case, it would certainly impossible to continue to argue that vaccines are responsible for autism. This continued belief that vaccinations cause autism is probably maintained at least partially by the fact that some of the the first signs we notice regarding autism surround the delays in language development and social-interaction deficits that become evident at around age 24 to 36 months, at about the same time that vaccines are given. While it is easy to assume that to things are linked when they occur closely together in time, without a reasonable explanation of the mechanism involved or congruence with our existing knowledge about autism we are left with a theory that is based on nothing more than coincidence. That is simply insufficient for scientific purposes and we must bring more rigor to our study of autism if we are going to ever fully understand its causes and develop more effective treatment options.
The complexities of autism make it difficult to know where to begin, but some brief background on the disorder is helpful in understanding our understanding of the disorder at present and development of treatments and interventions.
Background:
While many would begin by describing Leo Kanner's work with individuals with autism in the 1950s, I will begin at the point in which our modern definition of autism was developed. Wing and Gould (1979) have been credited with developing a definition of autism that is characterized by a triad of deficits in communication, deficits in social interaction, and repetitive stereotyped behaviors. This research led to the initial American Psychiatric Association's1980 DSM-III definition of autism that serves as the standard for medical diagnoses of autism. The current DSM-IV-TR places autistic disorder under the umbrella of autism spectrum disorders along with Asperger's disorder, pervasive developmental disorder not otherwise specified (NOS), Rett's disorder, and childhood disintigrative disorder. The triad of communication deficits, social interaction deficits, and repetitive stereotyped behaviors are important to our understanding of what autism is and how it impacts individuals with the disorder.
Early indicators of potential autism:
Early indicators of potential autism that parents might observe may include such behaviors as colic, arching of the back, delays in speaking first words and/or sentences, failure to acquire joint attention, sensitivity to textures/clothing/noise, obsession with parts of objects, repeatedly spinning and twirling body or objects, hand flapping, difficulty maintaining eye contact, obsessions/playing with water/edges/lights, failure to develop the ability to engage in cooperative play, obsession with sniffing/smelling people or objects, impulsivity, difficulties with attention, difficulties with transition, and unpredictable and/or explosive behavior. Any combination of these behaviors or additional behaviors not listed may be present. The key to understanding your child's behavior may be an indicator of autism is to consider the behaviors in the context of the overall definition of autism. Do the behaviors indicate concerns in the areas of communication, social-interaction, and repetitive stereotyped behavior. For example, both an individual with autism and an individual with apraxia have difficulties with communication, but the individual with autism will also concurrent deficits in social interaction and repetitive stereotyped behaviors. Also, delays should be considered in relation to overall development.
Cognitive Theories Related to Autism:
The cognitive impact of autism is highly individual, but some general theories have been proposed to describe the impact of the disorder on cognitive functioning. Researchers such as Uta Frith and Simon Baron-Cohen has proposed that individuals with autism lack a "Theory of Mind". Theory of Mind is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires and intentions that are different from one's own. They propose that individuals with autism have a difficult time understanding the perspective of others. This has been experimentally measured using the "Sally-Anne Test". In this experiment, a child is given a doll named Sally-Anne who has a basket with an object inside. The experimenter opens the basket so that the child, the experimenter, and the doll can see that there is an object inside. The doll is then taken away, but the basket is left behind. The experimenter then removes the object from the basket while the child observes. Finally, the experimenter brings the doll back and asks the child what Sally Anne thinks is in the basket. Children with a Theory of Mind will state that Sally Anne thinks the object is still in the basket because she was not present to see it removed. Children with autism, however, will state that Sally Anne thinks the basket is empty because they assume that Sally Anne's perspective and belief is the same as their own.
"Weak Central Coherence Theory" is another cognitive theory advanced by Uta Frith. The premise of this theory is that individuals with autism have a tendency to gravitate toward the analytic (division into elements) and away from the gestalt (concept of wholeness). Difficulty grasping the gestalt of a given social situation or the gestalt of the combination of the various pieces of a facial expression (e.g. difficulty differentiating between a happy facial expression and an angry facial expression that may have different positions for the lips and mouth, but have little observable change in the eyes or other parts of the face.) Evidence for this cognitive preference has been asserted via the demonstrated strength demonstrated by individuals with autism on the Embedded Figures Test. A preference toward the analytic fits with some behaviors observed with autism such as spinning the wheels on a toy car rather than playing with a toy car in an imaginative manner, difficulty reading facial expressions, and difficulty understanding social situations.
The cognitive theory of an "Executive System" refers to higher level cognitive processes such as planning, organizing, initiating, inhibiting, working memory, attention, etc. It has been proposed that individuals with autism have deficit in executive functioning. These deficits fit with many behaviors we see exhibited by individuals with autism. For example difficulties with transition can represent a difficulty either initiating a behavior or inhibiting a behavior.
When considering the cognitive processes of an individual with autism it is more useful to think of theories like these in terms of their relationships to each other and in terms of the overall cognitive approach to a given task of an individual with autism. In consideration of these theories and our experience with behaviors related to autism we can could describe a cognitive approach to a given task as follows:
Example: A child with autism is attempting to understand the social expectations of a game of Uno with three peers at a small table. The child may be having difficulty with taking turns due to problems inhibiting the response placing a card (Executive Functioning Deficit). The difficulty taking turns may also be due an inability of the child to understand the beliefs/desires of others and therefore unable to understand why peers would not want him to play a card when the child wants to (Theory of Mind). Another possible explanation would be that the child cannot understand to whole concept of playing a game and the relationship between taking turns and making the game progress (Weak Central Coherence Theory).
Assessment of Individuals with Autism:
Assessment of individuals with autism often occurs initially before enrollment in kindergarten, but may potentially occur at any time during childhood. An initial assessment may be made by the child's pediatrician, neurologist, psychiatrist, clinical psychologist/LCSW/Psychiatric Nurse Practitioner, school psychologist, or autism specialist through the healthcare system or education system. Like all assessments of mental health disorders, there is no single method for conducting the assessment. Individuals in the healthcare system use the DSM-IV-TR definition of autism to guide their assessment and engage in a process of differential diagnosis to establish the diagnosis. In the educational system, the federal definition of autism (adapted at the state level) drives the process of identification of eligibility and a diagnosis is not made. In all cases, the breadth and depth of an assessment varies between practitioners. It has been my experience over the years that there is no one type of practitioner that produces consistently better assessments.
A typical assessment should begin with the collection of background information, including a developmental and medical history. Existing records, assessments, and other data will also be reviewed and relevant information included in the assessment. Often times, this will include structured interviews for gathering indirect assessment data or completion of behavioral assessment questionnaires. The child will also be observed in natural environments and across settings. Direct assessment may also be used in which the child will directly participate in testing activities with the examiner. Information will be gathered across all areas of development, with a focus on the child's functioning in the areas of communication and social-emotional functioning. Once the information has been gathered, the examiner will interpret the results and generate a report to share with you. In the healthcare system, the examiner will provide a diagnosis to you. In the educational system, a team of individuals will meet with you to review the results and determine as a team (with your input) as to whether your child is eligible to receive special education services. If the child is eligible, you will be then made an offer of Free and Appropriate Public Education in the form of an Individual Education Program (IEP) that you will be given the opportunity to accept or reject.
Interventions:
A number of interventions are available for addressing deficit skill areas and the behaviors associated with autism. They can be broadly categorized into medical, psychological, educational, and alternative/other interventions. Under medical interventions, we find pharmacological (medicine) interventions, occupational therapies, and dietary and supplemental intervention guided by a medical professional. Under psychological interventions, behaviorism is the primary theoretical construct under which interventions are generated. Under educational interventions, we find a broad range of interventions based on varying degrees to a broad range of psychological theories. Again, however, most of the educational interventions draw primarily upon aspects of behaviorism.
When considering interventions it is important for parents to think about the individual needs of their child as based on objective assessment data. Once an area of need has been recognized, an intervention can be developed that best meets the child's individual needs. While most people tend to discuss interventions for autism at the program level (e.g. TEACCH, ABA programs, etc.), I feel it is more important to understand interventions in terms of their theoretical foundations. No one program or approach is superior in all cases and drawing interventions from different theoretical foundations is necessary to optimize interventions between different students, as well as interventions particular to a individual student.
Areas of controversy:
The etiology (cause/s) of autism has not yet been conclusively determined. In recent years there has been concern regarding vaccines being a potential cause of autism. Current research indicates that no relationship can be established between vaccines and autism. The original research that indicated a correlation between vaccines and autism was published in the premier British Medical Journal, The Lancet. This research was later found to be fraudulent and retracted from the Lancet. Unfortunately, by the time this was fully addressed it had been spread by the media as a potential cause to the extent that it became taken as fact. This is part of the unfortunate process that can occur when the media reports research that has not been replicated and/or is correlational, but lacks an explanation of a viable mechanism of causality. Regarding the etiology of autism, there is research to support the hypothesis that it is likely that a combination of genes predisposes one to develop autism and some type of environmental insult during the gestational period (possibly during the first 14 to 20 months of development) triggers the disorder. This results in changes in brain development that lead to the deficits of executive functioning, communication, social interaction, and the repetitive stereotyped behaviors. The environmental insult may be viral in nature or perhaps a toxin of some sort. Should this be the case, it would certainly impossible to continue to argue that vaccines are responsible for autism. This continued belief that vaccinations cause autism is probably maintained at least partially by the fact that some of the the first signs we notice regarding autism surround the delays in language development and social-interaction deficits that become evident at around age 24 to 36 months, at about the same time that vaccines are given. While it is easy to assume that to things are linked when they occur closely together in time, without a reasonable explanation of the mechanism involved or congruence with our existing knowledge about autism we are left with a theory that is based on nothing more than coincidence. That is simply insufficient for scientific purposes and we must bring more rigor to our study of autism if we are going to ever fully understand its causes and develop more effective treatment options.
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