Autism Spectrum DisorderWhat is Autism?Autism Spectrum Disorder, or ASD, is a developmental disability that falls under the umbrella of Pervasive Developmental Disorder or PDD. Autism is a complex developmental disability usually appearing during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain. The major area of impact is social interaction and communication skills. Both children and adults with Autism Spectrum Disorder typically show difficulties in verbal and non-verbal communication, social interactions, and recreation or play activities.
Facts and Statistics• 1 in 150 births• 1 to 1.5 million Americans • Fastest-growing developmental disability • 10 - 17 % annual growth • $90 billion annual cost • Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention
Pervasive Developmental DisorderAutism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), which is a class of disorders that has in common the following characteristics: impairments in social interaction, imaginative activity, verbal and nonverbal communication skills, and a limited number of interests and activities that tend to be repetitive. The five disorders are:(1) Autism, (2) Rett syndrome, (3) Childhood disintegrative disorder, (4) Asperger syndrome, (5) Pervasive Developmental Disorder Not Otherwise Specified (or PDD-NOS) Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 150 births (Centers for Disease Control Prevention, 2007). 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, or social boundaries; family income levels; lifestyle choices; 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. Autism, Aspergers, and PDD-NOS are usually referred to as being “on the spectrum”. In other words, these are the disorders which make up Autism Spectrum Disorder (ASD), but share symptoms with other Pervasive Developmental Disorders, making diagnosis difficult.
What are the symptoms of Autism Spectrum Disorder?The major symptoms include delays and difficulties in social development and communication skills, and usually some kind of repetitive behavior. People with autism have social impairments and often lack the intuition about others that many people take for granted. Social impairments become apparent early in childhood and continue through adulthood.Autistic infants show less attention to social stimuli, smile and look at others less often, and respond less to their own name. Autistic toddlers have more dramatic social deviance; for example, they have less eye contact and anticipatory postures and are more likely to communicate by manipulating another person's hand. Three- to five-year-old autistic children are less likely to exhibit social understanding, approach others spontaneously, imitate and respond to emotions, communicate nonverbally, and take turns with others. However, they do form attachments to their primary caregivers. A good portion of individuals with autism do not develop enough natural speech to be able to communicate normally from day to day. Differences in communication may be present from the first year of life, including delayed start of babbling, unusual gestures, lack of responsiveness. In the second and third years, autistic children have less frequent and less diverse babbling, consonants, words, and word combinations; they gesture more an talk less. Autistic children are less likely to make requests or share experiences, and are more likely to simply repeat others' words (echolalia) or reverse pronouns. Autistic children may have difficulty with imaginative play and with developing symbols into language.
Repetitive behaviorAutistic individuals display many forms of repetitive or restricted behavior, which the Repetitive Behavior Scale-Revised (RBS-R) categorizes as follows.* Stereotypy is apparently purposeless movement, such as hand flapping, head rolling, or body rocking. * Compulsive behavior is intended and appears to follow rules, such as arranging objects in a certain way. * Sameness is resistance to change; for example, insisting that the furniture not be moved or refusing to be interrupted. * Ritualistic behavior involves the performance of daily activities the same way each time, such as an unvarying menu or dressing ritual. This is closely associated with sameness and an independent validation has suggested combining the two factors. * Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program. * Self-injury includes movements that injure or can injure the person, such as biting oneself. Dominick et al. reported that self-injury at some point affected about 30% of children with ASD. These repetitive behaviors by themselves are not specific to Autism Spectrum Disorder, but there seems to be a pattern with autism that these behaviors occur more often and tend to be more severe.
Other symptomsAutistic individuals may have symptoms that are independent of the diagnosis, but that can affect the individual or the family. An estimated 0.5% to 10% of individuals with ASD show unusual abilities, ranging from splinter skills such as the memorization of trivia to the extraordinarily rare talents of prodigious autistic savants.Unusual responses to sensory stimuli are more common and prominent in autistic children, although there is no good evidence that sensory integration symptoms make autism different from other developmental disorders. Differences are greater for under-responsivity (for example, walking into things) than for over-responsivity (for example, distress from loud noises) or for seeking (for example, rhythmic movements). Several studies have reported associated motor problems that include poor muscle tone, poor motor planning, and toe walking; ASD is not associated with severe motor disturbances. Atypical eating behavior occurs in about three-quarters of children with ASD, to the extent that it was formerly a diagnostic indicator. Selectivity is the most common problem, although eating rituals and food refusal also occur; this does not appear to result in malnutrition. Although some children with autism also have gastrointestinal (GI) symptoms, there is a lack of published evidence to support the theory that autistic children have more or different GI symptoms than usual. Studies have reported conflicting results, and the relationship between GI problems and ASD remains unclear. Sleep problems are known to be more common in children with developmental disabilities, and there is some evidence that children with ASD are more likely to have even more sleep problems than those with other developmental disabilities; autistic children may experience problems including difficulty in falling asleep, frequent nocturnal awakenings, and early morning awakenings.
What to look for in your childThe characteristic behaviors of autism spectrum disorders may or may not be apparent in infancy (18 to 24 months), but usually become obvious during early childhood (24 months to 6 years).As part of a well-baby/well-child visit, your child's doctor should do a "developmental screening," asking specific questions about your baby's progress. The National Institute of Child Health and Human Development (NICHD) lists five behaviors that signal further evaluation is warranted:* Does not babble or coo by 12 months * Does not gesture (point, wave, grasp) by 12 months * Does not say single words by 16 months * Does not say two-word phrases on his or her own by 24 months * Has any loss of any language or social skill at any age Having any of these five "red flags" does not mean your child has autism. But because the characteristics of the disorder vary so much, a child showing these behaviors should have further evaluations by a multidisciplinary team. This team may include a neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, or other professionals knowledgeable about autism.
My experience with Autism Spectrum DisorderMy experience with Autism Spectrum DisorderIt took over 13 years for us to get a definitive diagnosis of ASD for our daughter, and once we, and the professional service providers, knew exactly what we were dealing with, her progress improved dramatically. She has a diagnosis of PDD-NOS and bipolar disorder now, but the list of what she had previously is long and distinguished. At one point, several doctors decided there was really nothing wrong with her and her symptoms were force upon her by her parents. Child Protective Services was called in at this point with the accusation of Münchhausen by proxy. Of course, there was no substance to the case and it was dropped after a time, but can you imagine being accused of abuse by forcing your child to be developmentally delayed by three of the doctors who are supposed to be helping?We got new doctors, both primary care and psychological, and were accepted into the wraparound program. That is when things really started improving for our daughter. The local university (Western Michigan University) had, at the time, an Autism Clinic under their Psychology Department, and that is where we finally got a solid diagnosis that put her on the spectrum of Autism Spectrum Disorder. They also had a parent training program for working with children with ASD and we were able to get through most of the training before the Autism Clinic was closed due to funding concerns. Things began improving dramatically about this time. Our daughter was also participating in a pilot program (also a WMU clinic, but under the Occupational Therapy Department) of Occupational Therapy Social Group, or OT Social. Using occupational therapy tasks in a social setting (and making it fun for them) works very well, and that is one program I would definitely recommend. Oh, now don’t get me wrong. Our daughter has not been magically cured, and would probably have done even better had she been given the kind of help she has now at an early age. She is a teen, and the difference now is that she knows it! For more about our daughter and Autism Spectrum Disorder go here:
For more information on Pervasive Developmental Disorders and Autism Spectrum Disorders, here are some links to some other articles:
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A good site for parents raising special kids with autism by my friend Kathy Medina is called: Finding God in Autism
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