Websites: The Autism Society of America, Autism Speaks, Center for the study of Autism, Cure Autism Now
What is Autism?
Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”
The five disorders under PDD are:
Childhood Disintegrative Disorder (CDD)
PDD-Not Otherwise Specified (PDD-NOS)
Each of these disorders has specific diagnostic criteria which been outlined in the American Psychiatric Association's Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).
Prevalence of Autism
Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 166 births (Centers for Disease Control Prevention, 2004). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise.
Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.
Autism knows no racial, ethnic, social boundaries, family income, lifestyle, or educational levels and can affect any family, and any child.
And although the overall incidence of autism is consistent around the globe, it is four times more prevalent in boys than in girls.
As mentioned previously, autism is a spectrum disorder, and although it is defined by a certain set of behaviors, children and adults with autism can exhibit any combination of these behaviors in any degree of severity. Two children, both with the same diagnosis, can act completely different from one another and have varying capabilities.
You may hear different terms used to describe children within this spectrum, such as autistic-like, autistic tendencies, autism spectrum, high-functioning or low-functioning autism, more-abled or less-abled; but more important than the term used to describe autism is understanding that whatever the diagnosis, children with autism can learn and function normally and show improvement with appropriate treatment and education.
Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions. They may have difficulty initiating and/or maintaining a conversation. Their communication is often described as talking at others instead of to them. (For example, monologue on a favorite subject that continues despite attempts by others to interject comments).
People with autism also process and respond to information in unique ways. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may also exhibit some of the following traits:
Insistence on sameness; resistance to change
Difficulty in expressing needs, using gestures or pointing instead of words
Repeating words or phrases in place of normal, responsive language
Laughing (and/or crying) for no apparent reason showing distress for reasons not apparent to others
Preference to being alone; aloof manner
Difficulty in mixing with others
Not wanting to cuddle or be cuddled
Little or no eye contact
Unresponsive to normal teaching methods
Sustained odd play
Obsessive attachment to objects
Apparent over-sensitivity or under-sensitivity to pain
No real fears of danger
Noticeable physical over-activity or extreme under-activity
Uneven gross/fine motor skills
Non responsive to verbal cues; acts as if deaf, although hearing tests in normal range.
For most of us, the integration of our senses helps us to understand what we are experiencing. For example, our sense of touch, smell and taste work together in the experience of eating a ripe peach: the feel of the peach's skin, its sweet smell, and the juices running down your face. For children with autism, sensory integration problems are common, which may throw their senses off they may be over or under active. The fuzz on the peach may actually be experienced as painful and the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary daily noises painful. Many professionals feel that some of the typical autism behaviors, like the ones listed above, are actually a result of sensory integration difficulties.
There are also many myths and misconceptions about autism. Contrary to popular belief, many autistic children do make eye contact; it just may be less often or different from a non-autistic child. Many children with autism can develop good functional language and others can develop some type of communication skills, such as sign language or use of pictures. Children do not "outgrow" autism but symptoms may lessen as the child develops and receives treatment.
One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children, they can and do give affection. However, it may require patience on the parents' part to accept and give love in the child's terms.
There is no known single cause for autism, but it is generally accepted by the medical community that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in autistic versus non-autistic children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. While no one gene has been identified as causing autism, in many families there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. Researchers are searching for irregular segments of genetic code that autistic children may have inherited. It also appears that some children are born with a higher susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.
Researchers are also investigating the possibility that, under certain conditions, a cluster of unstable genes may interfere with brain development, resulting in autism. Still other researchers are investigating problems during pregnancy or delivery, as well as environmental factors such as viral infections, metabolic imbalances, and exposure to environmental chemicals.
Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy have also been associated with an increased risk of autism. Early in 2002, The Agency for Toxic Substances and Disease Registry (ATSDR) prepared a review of hazardous chemical exposures and autism and found no compelling evidence for an association. However, there was very limited research and more needs to be done to rule out chemicals.
The question regarding a relationship between vaccines and autism continues to be debated. In 2001, an investigation by a committee of the Institute of Medicine concluded that the "evidence favors rejection of a causal relationship.... between MMR vaccines and autistic spectrum disorders (ASD)." The committee however, acknowledged that "they could not rule out" the possibility that the MMR vaccine could contribute to ASD in a small number of children. While other researchers agree the data does not support a link between the MMR and autism, they also agree more research is clearly needed.
Whatever the cause, it is clear that children with autism and PDD are born with the disorder or born with the potential to develop it. Bad parenting does not cause it. It is not a mental illness. Children with autism are not unruly kids who choose not to behave. Furthermore, no known psychological factors in the development of a child have been shown to cause autism.
The term "PDD" is widely used by professionals to refer to children with autism and related disorders; however, there is a great deal of disagreement and confusion among professionals concerning the PDD label. Diagnosis of PDD, including autism, or any other developmental disability, is based upon the Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV), published by the American Psychiatric Association, Washington D.C., 1994, and is the main diagnostic reference of Mental Health professionals in the United States of America.
According to the DSM-IV, the term "PDD" is not a specific diagnosis, but an umbrella term under which the specific diagnoses are defined.
Learn more about:
Childhood Disintegrative Disorder
Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)
Other Related Syndromes/Disorders
Diagnostic labels are used to indicate commonalities among individuals. The key defining symptom of autism that differentiates it from other syndromes and/or conditions is substantial impairment in social interaction (Frith, 1989). The diagnosis of autism indicates that qualitative impairments in communication, social skills, and range of interests and activities exist. As no medical tests can be performed to indicate the presence of autism or any other PDD, the diagnosis is based upon the presence or absence of specific behaviors. For example, a child may be diagnosed as having PDD-NOS if he or she has some behaviors that are seen in autism, but does not meet the full criteria for having autism. Most importantly, whether a child is diagnosed with PDD (like autism) or PDD-NOS, his/her treatment will be similar.
Autism is a spectrum disorder, with symptoms ranging from mild to severe. As a spectrum disorder, the level of developmental delay is unique to each individual. If a diagnosis of PDD-NOS is made, rather than autism, the diagnosticians should clearly specify the behaviors present. Evaluation reports are more useful if they are specific and become more helpful for parents and professionals in later years when reevaluations are conducted.
Ideally, a multidisciplinary team of professionals should evaluate a child suspected of having autism. The team may include, but may not be limited to: a psychologist or psychiatrist, speech pathologist, and other medical professionals, including a developmental pediatrician and/or neurologist. Parents and teachers should also be included, as they have important information to share when determining a child's diagnosis.
In the end, parents should be more concerned that their child find the appropriate educational treatment based on their needs, rather than spending too much effort to find the perfect diagnostic label. Most often, programs designed specifically for children with autism will produce greater benefits, while the use of the general PDD label can prevent a child from obtaining services relative to their needs.
Also within each diagnosis is the Panel of Professional Advisors' recommended definition of the Autism Spectrum and related syndromes and conditions, which are not to be used for research purposes, but rather for defining the demographics of the membership of the Autism Society of America. The Autism Society of America is not attempting to represent individuals with related syndromes or conditions who do not also have autism, but rather those where autism is present in related syndromes and conditions, and where autism is the defining syndrome, e.g., autism-aspergers. The rationale for this position is due to the unique service needs that are imperative for individuals with autism that may not be required of the cohort disability. (See also "General Standards of Care for Individuals with Autism Throughout the Lifespan.")
The central features of Autistic Disorder are the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest. The manifestations of this disorder vary greatly depending on the developmental level and chronological age of the individual. Autistic Disorder is sometimes referred to as Early Infantile Autism, Childhood Autism, or Kanner's Autism (page 66).
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
Qualitative impairment in social interaction, as manifested by at least two of the following:
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
Failure to develop peer relationships appropriate to developmental level
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)
Lack of social or emotional reciprocity
Qualitative impairments in communication as manifested by at least one of the following:
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)
In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
Stereotyped and repetitive use of language or idiosyncratic language
Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
Encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, nonfunctional routines or rituals
Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
Persistent preoccupation with parts of object
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
Language as used in social communication
Symbolic or imaginative play
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
The essential features of Asperger's Disorder are severe and sustained impairment in social interaction and the development of restricted, repetitive patterns of behavior, interest, and activity. The disturbance must clinically significant impairment in social, occupational, and other important areas of functioning. In contrast to Autistic Disorder, there are no clinically significant delays in language. In addition there are no clinically significant delays in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior, and curiosity about the environment in childhood.
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
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
Failure to develop peer relationships appropriate to developmental level
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 to other people)
Lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, non-functional routines or rituals
Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
Persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
Asperger's Disorder was first described in the 1940s by Viennese pediatrician Hans Asperger who observed autistic-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger's Disorder was simply a milder form of autism and used the term "high-functioning autism" to describe these individuals. Professor Uta Frith, with the Institute of Cognitive Neuroscience of University College London and author of Autism and Asperger Syndrome, describes individuals with Asperger's Disorder as "having a dash of Autism." Asperger's Disorder was added to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger's Disorder a less severe form of autism.
What distinguishes Asperger's Disorder from autism is the severity of the symptoms and the absence of language delays. Children with Asperger's Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger's Disorder may just seem like a normal child behaving differently.
Children with autism are frequently seen as aloof and uninterested in others. This is not the case with Asperger's Disorder. Individuals with Asperger's Disorder usually want to fit in and have interaction with others; they simply don't know how to do it. They may be socially awkward, not understanding of conventional social rules, or may show a lack of empathy. They may have limited eye contact, seem to be unengaged in a conversation, and not understand the use of gestures.
Interests in a particular subject may border on the obsessive. Children with Asperger's Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowing categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts.
One of the major differences between Asperger's Disorder and autism is that, by definition, there is no speech delay in Asperger's. In fact, children with Asperger's Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature or it may be formal, but too loud or high pitched. Children with Asperger's Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give and take nature of a conversation.
Another distinction between Asperger's Disorder and autism concerns cognitive ability. While some individuals with Autism experience mental retardation, by definition a person with Asperger's Disorder cannot possess a "clinically significant" cognitive delay and most possess an average to above average intelligence.
While motor difficulties are not a specific criteria for Asperger's, children with Asperger's Disorder frequently have motor skill delays and may appear clumsy or awkward.
Diagnosis of Asperger's Disorder is on the increase although it is unclear whether it is more prevalent or whether more professionals are detecting it. The symptoms for Asperger's Disorder are the same as those listed for autism in the DSM-IV. However, children with AS do not have delays in the area of communication and language. In fact, to be diagnosed with Asperger, a child must have had normal language development as well as normal intelligence. The DSM-IV criteria for AS specifies that the individual must have "severe and sustained impairment in social interaction, and the development of restricted, repetitive patterns of behavior, interests and activities," that must "cause clinically significant impairment in social occupational or other important areas of functioning."
The first step to diagnosis is an assessment, including a developmental history and observation. This should be done by medical professionals experienced with Autism and other PDDs. If Asperger's Disorder or high functioning autism is suspected, the diagnosis of autism will generally be ruled out first. Early diagnosis is also important; children with Asperger's Disorder who are diagnosed and treated early in life have an increased chance of being successful in school and eventually living independently. To learn more, see Consulting with Professionals.
Working with an Individual with Asperger Syndrome
Children with Asperger's Disorder may present a challenge for educators. While they appear capable and are good with memorization and factual information, they may be weak in comprehension and cognitively inflexible. Educators need to capitalize on their abilities, discovering their strengths and interests in order to develop their talents.
People with Asperger's Disorder particularly need assistance in developing their social and communication skills. Children and young adults who received social and communications skills training are better able to express themselves, understand language and become more skillful at communicating with others, increasing their likelihood of successful social interactions. Early intervention means a better chance for independent living and further education.
While few programs are designed specifically to address Asperger's Disorder, some of the treatment approaches used for people with "high functioning" Autism, such as Applied Behavioral Analysis (ABA) and Treatment & Education of Autistic and Related Communication of Handicapped Children (TEACCH), may be appropriate for a person with Asperger Syndrome. ABA is based on the idea that behavior rewarded will more likely be repeated. ABA is typically done on a one-to-one basis and may focus on specific behaviors and communication skills. TEACCH was developed at the School of Medicine at the University of North Carolina as a structured teaching approach that used the child's visual and rote memory strengths to improve communication, social and coping skills. Pictures and charts that show a daily schedule help the child with Asperger's Disorder to anticipate what will happen during the day. This is particularly important for children with Asperger's Disorder since they usually have difficulties with changes in routine. For more information on these programs and others, see treatment and education.
Because children with Asperger's Disorder may be only mildly affected, they may begin school prior to being diagnosed. During the elementary years, behavioral issues and immaturity may be a problem but academically, these children frequently do quite well. The ability to memorize information, do calculations and focus intensively serves them well. But as they move through the school system, difficulties with social skills, language and obsessive behaviors become more problematic and may leave them vulnerable to teasing from classmates.
Getting special education services may be difficult because children with AS have normal or above normal intelligence and appear capable. However, every child with disabilities is guaranteed a free, appropriate public education through the Individuals with Disabilities Education Act (IDEA). Keep in mind that IDEA establishes that an appropriate educational program must be provided, not necessarily an "ideal" program or the one you feel is best for your child. The law specifies that educational placement should be determined individually for each child, based on that child's specific needs, not solely on the diagnosis or category. No one program or amount of services is appropriate for all children with disabilities. It is important that you work with the school to obtain the educational support and services that your child needs. The first step should be a comprehensive needs assessment that will become the blueprint for your child's educational plan. Then, in collaboration with your child's school and teachers, develop a well-defined and thorough Individualized Education Plan (IEP). The IEP is a written document that outlines the child's individual educational program, tailored to his or her needs. A program appropriate for one child with Asperger's Disorder may not be appropriate for another. See Educational Approaches for more information.
While many children with Asperger's Disorder may participate in mainstream society, they still need support services. Teachers need to be informed that these children are not simply acting up or being difficult.
Counselors can provide emotional support and assist with social skills, helping children with AS to learn how to react to social cues and situations. Children with Asperger's Disorder may use a "buddy" who serves as a role model for social situations and may facilitate interactions with others by explaining appropriate behavior.
Speech and language therapists may help in the use of appropriate language and occupational therapists can deal with delays in motor development.
Dr. Stephen Bauer, a developmental pediatrician at the Pediatric Development Center of Unity Health in Rochester, New York, suggests that the most important step in helping children with Asperger's Disorder is for schools to recognize that the child has "an inherent developmental disorder which causes him/her to behave and respond in a different way from other students." Because children with Asperger's Disorder respond best to a regular, organized routine, Bauer recommends the use of charts and pictures to help the child visualize the day and to prepare him or her for any changes in advance. Bauer also emphasizes the need to avoid power struggles since children with Asperger's Disorder will become more rigid and stubborn if confronted or forced.
Adults with Asperger Disorder
The transition for individuals with Asperger's Disorder from federally-mandated services through the school system to adult services can be a challenge. While entitlement to public education ends at age 18, the IDEA requires that transition planning begins at age 14 and becomes a formal part of the student's Individualized Education Plan (IEP). This transition planning should include the student with AS, parents and members of the IEP team who work together to help the individual make decisions about his/her next steps. An Individualized Transition Plan (ITP) is developed that outlines transition services that may include education or vocational training, employment, living arrangements and community participation, to name a few. (See also Life After High School)
The first step in transition planning should be to take a look at the individual's interests, abilities, and needs. For example, what type of educational needs must be met? College, vocational training, adult education? Where can the young adult find employment and training services? What types of living arrangements are best?
Many individuals with Asperger's Disorder are able to continue their education by attending college or trade schools. This also provides an opportunity to further social interaction, particularly in areas where the individual has key interests. Be sure that the institution offers training or classes of interest to the individual. Find out what accommodations are available to address his or her special needs. Work with your young adult in selecting classes that take advantage of his or her strengths.
Employment should take advantage of the individual's strengths and abilities. Temple Grandin, Ph.D. suggests, "jobs should have a well-defined goal or endpoint, " and that your "boss must recognize your social limitations." In A Parent's Guide to Asperger Syndrome and High-Functioning Autism the authors describe three employment possibilities: competitive, supported and secure or sheltered.
Competitive employment is the most independent with no support offered in the work environment. Individuals with AS may be successful in careers that require focus on details but have limited social interaction with colleagues such as computer sciences, research or library sciences. In supported employment, a system of supports allow individuals to have paid employment in the community, sometimes as part of a mobile crew, other times individually in a job developed for the person. In secure or sheltered employment, an individual is guaranteed a job in a facility-based setting. Individuals in secure settings generally also receive work skills and behavior training while sheltered employment may not provide training that would allow for more independence.
To look for employment, begin by contacting agencies that may be of help such as state employment offices, social services offices, mental health departments, and disability-specific organizations. Find out about special projects in your area and determine the eligibility to participate in these programs. It is important to find employers who are willing to work with people with Asperger's Disorder.
Whether an adult with Asperger's Disorder continues to live at home or moves out into the community, will be determined in large part by his/her ability to manage every day tasks with little or no supervision. For example, can he handle housework, cooking, shopping, and bill paying? Is she able to use public transportation? Many families prefer to start with some supportive living arrangement and move towards increased independence.
Supervised group homes usually serve several individuals with disabilities. They are typically located in residential neighborhoods in an average family home. The homes are staffed by trained professionals who assist residents based on the person's level of need. Usually the residents have a job, which takes them away from home during the day.
A supervised apartment may be suitable for individuals who prefer to live with fewer people, but still require some supervision and assistance. There is usually no daily supervision, but someone comes by several times a week. The residents are responsible for going to work, preparing meals, personal care and housekeeping needs. A supervised apartment setting is a good transition to independent living.
Independent living means just that individuals live in their own apartments or houses and require little, if any, support services from outside agencies. Services may be limited to helping with complex problem-solving issues rather than day-to-day living skills. For instance, some individuals may need assistance with managing money or handling government bureaucracies. It is also important for those living independently to have a "buddy" who lives nearby that can be contacted for support. Support systems within the community might include bus drivers, waitresses, or coworkers.
Many people think of adulthood in terms of getting a job and living in a particular area, but having friends and a sense of belonging in a community are also important. Individuals with Asperger's Disorder may need assistance in encouraging friendships and structuring time for special interests. Many of the support systems developed in the early years may continue to be useful.
Other Resources About Asperger Syndrome
Many local chapters of the Autism Society of America have members who have Asperger Syndrome or parents of children with Asperger Syndrome. Some chapters even have special Asperger sub-groups.
To find a chapter near you, click here.
Asperger Syndrome Coalition of the U.S.
ASPEN (Asperger Syndrome Education Network)
The essential feature of Rett's Disorder is the development of multiple specific deficits following a period of normal functioning after birth. There is a loss of previously acquired purposeful hand skills before subsequent development of characteristic hand movement resembling hand wringing or hand washing. Interest in the social environment diminishes in the first few years after the onset of the disorder. There is also significant impairment in expressive and receptive language development with severe psychomotor retardation. (Page 71)
A. All of the following:
Apparently normal prenatal and prenatal development
Apparently normal psychomotor development through the first 5 months after birth
Normal head circumference at birth
B. Onset of all of the following after the period of normal development:
Deceleration of head growth between ages 5 and 48 months
Loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
Loss of social engagement early in the course (although often social interaction develops later)
Appearance of poorly coordinated gait or trunk movements
Severely impaired expressive and receptive language development with severe psychomotor retardation
Childhood Disintigrative Disorder (CDD)
The central feature of Childhood Disintegrative Disorder is a marked regression in multiple areas of functioning following a period of at least two years of apparently normal development. After the first two years of life, the child has a clinically significant loss of previously acquired skills in at least two of the following areas: expressive or receptive language; social skills or adaptive behavior; bowel or bladder control; or play or motor skills. Individuals with this disorder exhibit the social and communicative deficits and behavioral features generally observed in Autistic Disorder, as there is qualitative impairment in social interaction, communication, and restrictive, repetitive and stereotyped patterns of behavior, interests, and activities. (Page 73)
A. Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.
B. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:
Expressive or receptive language
Social skills or adaptive behavior
Bowel or bladder control
C. Abnormalities of functioning in at least two of the following areas:
Qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
Qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypes and mannerisms
D. The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia.
PDD Not Otherwise Specified (PDD NOS)
The essential features of PDD-NOS are: severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills; stereotyped behaviors, interests, and activities; and the criteria for Autistic Disorder are not met because of late age onset, atypical and/or sub threshold symptomotology are present. (Page 77-78)
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypical Personality Disorder, or Avoidant Personality Disorder. For example, this category includes "atypical autism"-- presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or sub threshold symptomatology, or all of these.
Cornelia DeLange Syndrome
Cornelia DeLange Syndrome is a relatively rare syndrome associated with autism. Individuals with this syndrome have low birth weight, delayed growth, small stature, small head size, and distinctive facial features including the eyebrows (which usually meet at the midline), long eyelashes, short up-turned nose, and thin down-turned lips. Individuals with Cornelia DeLange Syndrome have developmental delays with the greatest area being in receptive and expressive language. Additionally, they have heightened sensitivity to touch, present behavioral difficulties including hyperactivity, short attention span, oppositional and repetitive behavior, and self-injurious behavior. Because these behavioral characteristics are similar in many ways to those present in individuals with autism, "autistic-like behaviors" are listed as an associated complication for individuals with Cornelia DeLange Syndrome. (Cornelia DeLange Syndrome Foundation, 1998)
Tourette's Syndrome is an inherited neurological disorder characterized by repeated and involuntary body movements (tics) and uncontrollable vocal sounds. In a minority of cases, the vocalizations can include socially inappropriate words and phrases (coprolalia). Involuntary symptoms can include eye blinking, repeated throat clearing or sniffing, arm thrusting, kicking movements, shoulder shrugging, or jumping. Stereotyped motor movements, verbal stereotypes, such as, the repetition of words and phrases, and other mannerisms have suggested a potentially more interesting association between autism and Tourette's Syndrome. (Tourette's Syndrome Association, 1998)
Fragile X Syndrome
Early descriptions of Fragile X Syndrome focused on fully affected males and their many autistic-like features. These included: poor eye contact; language delay; perseveration and echolalia; self-abuse; behavioral stereotypes (hand flapping, body rocking); sensitivity to auditory stimuli or environmental change; tactile defensiveness; preoccupation with narrow range of stimuli; and poor social relating. Prevalence rates for Fragile X Syndrome amongst individuals with autism is approximately 10 percent. (Dykens & Volkmar, 1997, pp 390+)
William's Syndrome affects about 1 in 20,000 people and is caused, in most cases, by a deletion in one of the chromosomes 7s that contain the gene for elastin. People with autism with William Syndrome often show a distinctive cognitive profile. Relations between William Syndrome and autism have not yet been widely studied; however, some of the maladaptive behaviors of William Syndrome may be described as "autistic-like." These include obsessive worrying, perseveration, difficulties relating to peers, and body rocking and other repetitive behaviors. (Dykens & Volkmar, 1997, pp393+)
Down Syndrome occurs in approximately 1 in 800 births and is considered the most common chromosomal cause of retardation. Although rare, some epidemiological studies have found subjects with Down Syndrome and autism. Although autism is rare in persons with Down Syndrome, it should be considered in the range of diagnostic possibilities for persons with this syndrome. (Dykens & Volkmar, 1997, pp 394+) When autism affects a child with Down Syndrome the effects are quite severe, and, therefore, the autism condition must be the priority condition.
Tuberous Sclerosis affects as many as 1 in 10,000 people and is characterized by abnormal tissue growth or benign tumors in the brain and other organs such as the skin, kidneys, eyes, heart, and lungs. Autistic-like symptoms were first described in patients with Tuberous Sclerosis a decade before Kanner's classic delineation of Infantile Autism. These early noted symptoms include stereotypes, absents or abnormal speech, withdrawal, and impaired interactions. Today the Tuberous Sclerosis society suggests that approximately 60 percent of its membership have autism or autistic-like behavior or symptoms. (Bassiri, 1998, Personal Correspondence) (Dykens & Volkmar, 1997, pp 395+)
This syndrome has its onset in childhood and is characterized by acquired aphasia and seizures in association with abnormal EEG's. Landau-Kleffner Syndrome, often referred to as "acquired epileptic aphasia," may present autistic symptomatology. However, the primary symptom is represented by language regression. (Minshew Sweeney, & Bauman, 1997, pp 361+)
Visually and auditory impaired individuals may also have autism. Additionally, Kluver- Bucy Syndrome (Ivey M. et. al, 1989) has symptoms similar to autism such as difficulty in receiving and processing sensory information.
Occasionally with autism there are certain symptoms that become defining of the individual as he/she ages. It is critical not to confuse the evolving, defining symptom as primary in nature, but rather secondary to the syndrome of autism itself. Those symptomatologies are obsessive /compulsive disorder; bipolar disorder, depressions; anxiety disorder; epilepsy; and attention-deficit/hyperactivity disorder.
Disorders of Metabolism/Infections
Other forms of metabolic disorders may have autistic-like symptomatology. These include Prader-Willi Syndrome, PKU (phenylketonuria), and Lesch-Nyhan Syndrome to name a few. Additionally, there is a theory that identifies Candida yeast infection as a culpable agent in autism. (Rimland, 1988) The majority of cases of autism however, are of unknown origin.