In order to provide you with hands-on information that is different from the type you would find in traditional books or website on autism, we thought it best to present this session in the more interactive format of an F.A.Q. The questions we have posted represent the concerns our clients have voiced over the years. Please feel free to submit any question you feel should be added to our temporary list to aspiringminds@msn.com.
What is Autism?
Well, we have narrowed down the definition of autism to this simple comprehensive statement: Autism is a brain disorder that significantly impairs one's processing of information causing difficulties in social behavior, communication and learning. It is marked by a lack of synchrony between the parts of the developing brain, which plays a role in how information is perceived and processed.
Autism is not a vision or hearing issue, it is a processing issue. If you call your child while he is playing a video game, and he does not respond, it does not necessarily mean that he does not hear you. It could only mean that hearing his name competes with the activity he is engaged in and he chooses to continue with the activity instead of responding to his name. His brain is unable to process both inputs at the same time. Your child hears you calling him but his brain is unable to override the impulse to attend to the new stimuli and guide his attention to your calling his name. This, understandably, compromises his functioning at school because he struggles with tasks that require filtering, selective attention and shifts in attention focus.
Today, most reputable experts agree that genetics play a significant role and that there may be an environmental "X-factor", or unknown insult that results from an exposure to an environmentally produced toxin, or injury. According to this theory, genetics predispose an individual to be sensitive to certain toxins, or injuries, which are then encountered somewhere within the environment. The result of this combination of genetic predisposition and environmental insult is the development of autism. In the medical field, this is known as the "two-hit-theory", in that two potential sources are implicated.
Autism/Pervasive Developmental Disorder (PDD) is the umbrella under which autism falls. The different diagnostic terms that fall within the broad meaning of PDD, according to the DSM-IV-TR include:
While there are subtle differences and degrees of severity among these conditions, treatment and educational needs can be very similar for all of them. In the diagnostic manual used to classify mental disorders, the DSM-IV-TR (American Psychiatric Association, 2000), Autistic Disorder is listed under the heading of Pervasive Developmental Disorders. A diagnosis of autistic disorder is made when an individual displays 6 or more of 12 symptoms across three major areas: (a) social interaction, (b) communication, and (c) behavior. When children display similar behaviors but do not meet the specific criteria for autistic disorder (or the other disorders listed above), they may receive a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified, or PDD-NOS.
Autism is one of the disabilities specifically defined in the Individuals with Disabilities Education Act (IDEA), the federal legislation under which infants, toddlers, children, and youth with disabilities receive early intervention, special education and related services. IDEA defines the disorder as ?a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child?s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
Jordan's Story
Jordan is a healthy, active two-year-old, but his parents are concerned because he doesn't?t seem to be doing the same things that his older sister did at this age. He is not really talking, yet; although sometimes, he repeats, over and over, words that he hears others say. He doesn't use words to communicate, though. It seems he just enjoys the sounds of them. Jordan spends a lot of time playing by himself. He has a few favorite toys, mostly cars, or anything with wheels on it! And sometimes, he spins himself around as fast as he does the wheels on his cars. Jordan's parents are really concerned, as he started throwing a tantrum whenever his routine has the smallest change. More and more, his parents feel stressed, not knowing what might trigger Jordan's next bout.
Often, it seems Jordan doesn't notice or care if his family or anyone else is around. His parents just don?t know how to reach their little boy, who seems so rigid and far too set in his ways for his tender young age. After talking with their family doctor, Jordan's parents call the Early Intervention office in their community and make an appointment to have Jordan evaluated.
When the time comes, Jordan is seen by several professionals who play with him, watch him, and ask his parents a lot of questions. When they?re all done, Jordan is diagnosed with a form of autism. As painful as this is for his parents to learn, the early intervention staff try to encourage them. By getting an early diagnosis and beginning treatment, Jordan has the best chance to grow and develop. Of course, there is a long road ahead, but his parents take comfort in knowing that they are not alone and they are getting Jordan the help he needs.
What are the Signs of Autism?
Some or all of the following characteristics may be observed in mild to severe forms:
Communication problems (e.g., using and understanding language)
Difficulty relating to people, objects, and events
Unusual play with toys and other objects
Difficulty with changes in routine or familiar surroundings
Repetitive body movements or behavior patterns.
Children with autism or PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak; others have language that often includes repeated phrases or conversations. Children with more advanced language skills tend to use a small range of topics and have difficulty with abstract concepts. Repetitive play skills, a limited range of interests, and impaired social skills are generally evident as well. Unusual responses to sensory information, or example, loud noises, lights, certain textures of food or fabrics are also common.
There are more and more children with autism. Is autism on the increase ?
What is clear is that there is an increase in public awareness about autism. There is less social stigma. In addition, autism is undoubtedly being more widely diagnosed than it was 10 years ago. One reason for this increase in diagnosis is that the DSM (Diagnostic and Statistical Manual of Mental Disorders) has been revised again and again, each time including more diagnostic categories. In 1994, the DSM-IV added the diagnostic label of Asperger's disorder for the first time. This resulted in many individuals being newly diagnosed as now falling within the autism , spectrum disorder including many older children, teens and even adults who previously had been awkwardly diagnosed as having schizoid.
Do we know what causes autism?
No. Over the last years, there have been a number of correlational studies about causes of autism, which is only a first step. Correlation does not equate causation. A correlation only means that two things occur together, it does not mean that one causes the other. What we know about the causes of autism today is strictly correlational. In addition, many of the correlations are just theories that are not based on research but on case observations rather than on objective comparison of large groups of children exposed to some possible "causes". The strongest correlation thus far, supports genetic causes, even though almost everyone would agree that not every case of autism is genetically caused. There is some evidence supporting prenatal and perinatal (occurring during birth) causes. Evidence of these causes is much weaker than for genetic causes and falls into the category of "risk factors" meaning that they are events that seem to make autism more likely, probably when other things (like genetic factors) are also non-optimal.
Another correlational study associates vaccines to autism. Today about a third of children with autism start to develop language and then lose it, right after they receive vaccination. However, because of the correlation-does-not-prove-causation problem, to give credence to this theory, one must find children who were vaccinated and compare them to children of the same age and sex who were not vaccinated then examine the rates of autism. The "probable cause" finger was pointed at thimerisol, a mercury-containing preservative in vaccines. However, the kind of mercury in vaccines is different from the "bad" mercury in contaminated foods. Mercury is a chemical element, like hydrogen or nitrogen.
Is autism genetic?
To answer this question, one must understand the difference between genotype and phenotype. The study of genes that may cause a disorder is the study of that disorder's genotype. There are a few ways to look at the genetics of autism. First, there are genetic abnormalities such as fragile X, or medical conditions such as cystic fibrosis, or developmental disorders that represent genetic mutations such as Down's syndrome, for instance. Evidence from certain kinds of studies of large groups have suggested that autism is not likely caused by one gene but by several genes coming together in the genetic make up of one particular child. Since no child in a family gets all the same genes (except identical twins) not all the siblings will have autism. It is important to think of autism genes as autism "risk" genes since at least some of these genes probably don't cause autism all of the time, but only when they are activated by certain other things, like events of the pregnancy, at birth, etc.
The phenotype is how the genotype is expressed, how severe the autism is. As more families with multiple children with autism have been studied, it has become clear that the affected children have a condition that may result from a heavier dose of something that one, or even both, patents may have, but that in the parent's case does not cause a "disorder". Just having a particular gene mutation does not tell us whether that gene will produce a notable problem.
When do things start going developmentally wrong for my child?
It all can be traced back to the perception stage. Primary disabilities start to cascade with the failure to perceive or attend preferentially to sound, sight, touch, taste, etc. In regards to sound for instance, at the perception stage, it means that the child with auditory processing challenges might not perceive speech sounds and non-speech sounds as different in the way that is expected and might not respond to sound at all, become quite silent at the age babbling is expected. Another baby, less affected, might be able to make this distinction, but not well enough to filter out specific sounds he was hearing all the time, so he begins making odd little sounds instead. The difficulty to relate to sensory experiences compromises the child's learning experiences. For instance a child who out of has aversion to novelty beelines for one familiar toy out of the 20 other toys in the waiting room of the physician will have one learning experience as opposed to the 20 experiences his typically developing peers will have. All these factors have cumulative impact on their functioning as they slowly fall behind their peers.
Depending on the rest of the child's wiring, the "matrix of abilities and disabilities" (abilities that are strong and intact that step in to compensate for processing difficulties that are not able to function as expected) is formed, which defines how the child's brain can decide to try to compensate for the things that are weak and relying on the things that are stronger. Each child will be more successful at compensating in different spheres of functioning. A child who is not able to self-accommodate well is going to develop maladaptive symptoms such as screaming, tantrumming, self-injurious out of frustration and failure to have his needs met.
There are primary, secondary and tertiary deficits that are also called, innate, virtual and indirect symptoms. The primary deficits are the deficits the child is born with or acquires because of some atypical maturational pattern that might be influenced by genetics, environmental insult or a combination of the two. The secondary deficits exist because something underlying them has created them, and they for the reality of the child's view of the world (auditory processing, language deficts, etc.). The tertiary deficits or indirect symptoms can be seen as epiphenomena. They are not innate symptoms but rather they result from the child's failure to use the matrix of abilities and disabilities (pattern of strengths and weaknesses that coexist and mutually influence one another) to develop a self-accommodation that meets his needs so he can cope with the outside world.
I hear a lot about joint attention, why is it so important? Joint attention is described as the ability to coordinate attention between people and objects (Loveland & Landry, 1986) or as an attention state during which a child and a partner share an interest or affect (Adamson & Chance, 1998). Joint attention is divided into what is called RJA (Responding to joint attention) and IJA (initiating joint attention).RJA is the child?s ability to follow direction of someone's gaze or point. It is when the child looks at what mom is looking at. It is also the nonverbal instance when he throws the spoon of the floor and looks at mom and at the spoon alternatively to signal mom to pick up the spoon.Typically developing children achieve this by the time they are 3 months old.
Children with autism, on the other hand, demonstrate deficits in joint attention early in development. They do not look at what others look at.They do not move their eye gaze in the direction of speech, nor do they look at what others point to. As a result, they don't learn on their own and need to be taught directly. Language development is dependent upon joint attention. In early word learning, children are confronted with what we call "infinite possibilities" when hearing a word for the first time. That is, they must determine what the person who is saying the new word is referring to. For instance, if mom says "look at the dog" and the child has never heard the word "dog" before,he first needs to narrow down the field of infinite possibilities (among all other objects that are nearby) to be able to guess what mom is referring to. In order to do that he looks at his mother, follows her gaze to the object she is referring to, to infer what she means by "dog". This is how a child learns his vocabulary. Children on the autism spectrum do not look at what others are looking at, thus their language development is greatly compromised.
What is theory of Mind? Theory of Mind is the ability to understand the thoughts of others (Baron-Cohen, 1995). It is a cognitive function that allows us to depict the psychological states (thoughts and beliefs) of others and to separate them from our thoughts. It is the ability to know that others have different thoughts from ours. Neuro-typical children develop theory of mind between 2 ½ to 4 years of age.
Children with autism have difficulties viewing others ideas as being different from theirs. They assume that the way they look at something is the way everyone looks at it.This gravely impact their social skills because they are unable to understand that their friends have different perspectives from theirs. A child who is on the spectrum will, for instance, talks about his topic of interest over and over again because he assumes that his friends share what interests him at the time. It is thus difficult for him to understand the social world around him and to predict the action of others because one needs to understand the thoughts, motives and intentions of others to understand figurative language such as sarcasm or non-literal utterances. Activities designed to help children understand the emotions of others include direct instruction in recognizing facial expressions from photos and schematic drawings, and identifying situations, desire, and belief-based emotions. What causes speech delay? Study found that children with autism do not pay attention to what neuro-typical students use in their environment to create the right listening experience (Paul et al., 2007).In order to adequately process speech, a listener must be able to extract relevant features of sounds while ignoring details or irrelevant information.
There is some evidence that children with autism may have enhanced aspects of auditory processing in areas such as pitch memory, pitch discrimination and loudness. They over focus on these irrelevant aspects of speech and actually mask the critical invariant features (Lepisto et al., 2008). Speech, for instance is made of 2 components: the segmental component which are the speech sounds, and the supra-segmental which is the intonation. Typical children hear both components at the same time. When learning to speak, they first concentrate on sound (segmental) and do not pay much attention to the intonation (supra-segmental) which is irrelevant when they first attempt to understand the meaning of words. Children with ASD (autism spectrum disorder) have enhanced auditory processing for the supra-segmental component of speech. They over-select intonation and volume to the point that they do not pay attention to sounds.
What is echolalia?
Echolalia is one a child repeats what was said. Immediate echolalia is produced immediately following the production of an utterance. Delayed echolalia involves the repetition of speech after a significant delay. "Tommy, what is your name?" asked the teacher, "Tommy what is your name?" answers/repeats the child. Typically developing children engage in echolalia up to the age of 30 months. There are two schools of thoughts on echolalia. The functional approach which views echolalia as positive and serving a functional role (Prizant & Rydell, 1984) and the behavioral approach which views echolalia as undesirable and problematic (Lovaas, 1977). They believe echolalia occurs because of a lack of response alternative. In other words, because the child does not know how to answer, he repeats the question because he knows that speech is expected of him.
According to the functional approach (Prizant, 1983), immediate echolalia represents an extreme form of "gestalt processing", that is the child processes things as a whole first and repeat them while processing them. According to Prizant, it is important to determine the function immediate echolalia serves. The behavioral approach posits that echolalia competes with the development of new skills and can interfere with social interaction. Their approach is to teach the child a functional equivalent, for instance a scripted response alternative. "What did you do today?". Say "I don't know".
What is AAC?
AAC is an acronym that stands for Augmentative communication. It is an "approach designed to support, enhance or supplement the communication of individuals who are not independent verbal communicators in all situations" (Harryman & Kresheck, 1989). A thorough assessment must be done before deciding which devise is appropriate for the learner. It is important to first establish the child's current and anticipated future needs and determine the level of both his expressive and receptive language repertoire. Motor skills and behavioral issues are also factors to be taken into consideration.
Determine the purpose the devise will serve. Will it help the student express emotions, beliefs, will it help him solve problems, better describe events. Will it replace his language or enhance it? Will it help him develop a functional communication system? Where will it be used and with whom? The devise must be specific to the learner's profile and take into account his poor transfer of skills, his lack of intentional communication, his difficultly to retain new information, to generalize, to stereotypic behaviors, etc.
Diagnosing Autism
How does a parent embark on the journey from giving birth to a child with autism to suspecting that something is not right and then move to a diagnosis that opens the doors to early intervention?
There is no blood test to determine if a child has an autism spectrum disorder. The diagnosis is referred to as a descriptive diagnosis, meaning the diagnosis is based on observation of the child's behavior. The American Academy of Pediatrics (AAP, 2007), the American Academy of Neurology (2003), and the Child Neurology Society recommend developmental screening for young children at all well-child check-ups with an autism specific screen at 18 months of age. Due to potential regression, an additional autism screen is recommended at 24-30 months of age.
It is, thus daunting for parents to diagnose autism, most especially when it is about a first child, because the descriptive diagnosis is all about absence of behaviors. It is about what the child does not do. He does not speak, does not make eye contact, does not respond when he is called, does not interact with others, etc. and unless a parent knows what to look for, he might not necessarily know that something is not there. Consequently, although in retrospect, most parents would agree that they sensed that something was not quite right at a very early stage of their child's development, the elusive diagnosis may not be made for months, or even years and in the meantime, the under-diagnosed child does not receive the therapy that he or she most desperately needs.
As parents search for reasons for their child's atypical development, they are quite often led along rather convoluted path from pediatricians to audiologists, to speech and language pathologists, to developmental specialists, to various psychologists, etc. Unfortunately, many of these professionals that the parents meet along the way may not have any direct experience with autism.
Autism is diagnosed using the diagnostic criteria presented in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV-TR). Because there is no medical test for autism, it is not always easily diagnosed. Typically, the first flag is delayed speech. In order to be diagnosed with autism, the child must demonstrate deficiencies in social interaction and communication as well as restricted, repetitive, and stereotyped patterns of behavior, interests, and activities.
