By Larry Ciptak
What is Autism?
This pamphlet is designed to help you better understand autism and other related disorders, including characteristics and treatment.
Autism is one of the five pervasive developmental disorders (PDD), which are characterized by widespread abnormalities of social interactions and communication, and severely restricted interests and highly repetitive behavior. Autism is one diagnosis on a "spectrum" that includes Autism, Pervasive Developmental Not Otherwise Specified and Asperger's Disorder. The spectrum is referred to as Autism Spectrum Disorder (ASD).
When a child–typically 15 to 30 months in age–starts demonstrating problems or abnormalities in socialization, language or behavior, it's possible that the child is autistic or is on the spectrum. Significant speech delays, being non-verbal or babbling, possessing a limited vocabulary or using words or phrases in a highly repetitive and obsessive fashion are all characteristics of autism.
Autistic children have difficulties with socialization and are often withdrawn. Sometimes when they try to socialize they find themselves not knowing what to do, which leads to more social withdrawal.
Self-stimulatory behaviors–such as toe-walking, hand-flapping, staring for excessive periods of time, obsessing or clinging to a certain toy, jumping and other unusual behaviors are indicators of autism. The term "self-stimulatory" is used because the child finds the activity to be stimulating. However, the reinforcement that ensues has a tendency to interfere with normal socialization.
Hyper or hypo-sensitivities can occur in autistic children, such as being sensitive to certain fabrics, being insensitive to pain, having sleep difficulties and challenges adapting to changes in routine. Unusual eating behavior occurs in about three-quarters of children with ASD. Finicky eating habits, eating rituals and food refusal are also characteristics of a child with ASD.
When do autistic behaviors begin?
ASD behaviors and developmental delays can begin as early as before the first birthday, but normally manifest before the child is two or three. Additionally, a child who is developing normally for the first year-and-a-half can begin regressing. These regressions include losing words, social withdrawal, self-stimulation and other aforementioned odd behaviors.
What causes autism?
While numerous theories and notions abound, even with all the research being done on ASD there is no known cause for autism. Vaccines have been implicated; however, research has been inconclusive and most research indicates otherwise. It has long been presumed that there is a common cause at the genetic, cognitive, and neural levels for autism's symptoms. However, there is increasing suspicion that autism is instead a complex disorder whose core aspects have distinct causes that often co-occur. Autism has a strong genetic basis, although the genetics of autism are complex. Researchers are also analyzing brain structure, chromosomal abnormalities and other medical and environmental conditions. In short, no one knows for sure what causes autism.
How similar are autistic children, and what does "spectrum disorder" really mean?
Just as other children are unique, so are autistic children. Autistic Disorder is often referred to as a "spectrum" disorder, that is, the signs and symptoms fall on a continuum or spectrum from one extreme to another. Children with autism can present quite differently in the severity and extent of their ASD symptoms.
One autistic child may speak in short phrases, be affectionate with his parents and show relatively little self-stimulating or repetitive behavior while another child may be completely nonverbal, exhibit no affection and display continual odd behaviors such as spinning or lining up of objects.
The "spectrum" is a wider scope of diagnoses including Autism, Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) and Asberger's Disorder.
Think of the spectrum being a wide continuum with the debilitating Austistic Disorder on one end and Asperger's Disorder on the other. Asperger's Disorder consists of a variety of autistic-like symptoms including severe socialization deficits, a tendency to obsess on topics and odd use of language. People with Asberger's Disorder usually communicate without too much problem and typically want to be social–they just aren't sure how to go about it.
What is Pervasive Developmental Disorder Not Otherwise Specified?
When a child meets only some of the necessary diagnostic criteria for Autism or Asperger's Disorder, they may fall into a broader diagnostic category called "Pervasive Developmental Disorder Not Otherwise Specified", also known as "PDDNOS" or simply "PDD".
How do I know if my child has autism, Asbergers' or PDD?
Signs of any of the three disorders typically surface early on, between one and three years of age. A parent or pediatrician may express concerns about the child's lack of language development or other related abnormalities. The child is then typically referred to a facility that specializes in the evaluation, diagnosis and treatment of autism spectrum disorders.
A comprehensive evaluation by a child psychologist includes a complete history as well as an assessment of current functioning levels. The child's social engagement, play skills, speech and language capacity, eye contact and self-stimulatory behaviors are analyzed. An assessment is then provided which explains the diagnosis as well as treatment considerations and recommendations.
What is Asperger's Syndrome?
Asperger syndrome or Asperger's syndrome is an autism spectrum disorder that is characterized by significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported. Like with autism, the exact cause of Asperbers is not known, although research supports the likelihood of a genetic basis.
Individuals with Aspergers are typically fully fluent and of average intelligence, but use language in an odd and peculiar manner as well as display a mechanical quality to the flow of their speech. They also tend to be obsessive about topics and will speak on these topics–and sometimes nothing else–for days or weeks before moving on to another topic.
The main characteristic of Asperger's is poor socialization skills. These individuals tend to make poor eye contact, have difficulty understanding personal space, not know how to begin and end a conversation and have difficulties with any change to their routines.
Individuals with Asberger's Disorder do not have challenges with speech fluency and generally lack the self-stimulatory behaviors associated with autism.
Does Autism sometimes coincide with other problems, such as ADD?
It's not uncommon for psychiatric conditions to co-occur, such as autism and Attention Deficit Disorder (ADD). A child with autism may also display over activity, inattention, impulsivity or oppositional behavior. A comprehensive treatment plan for the child is necessary to not only target developmental delays and abnormalities, but to address these behavioral issues.
Depression is another co-occuring diagnosis, particularly in children with Asberger's Disorder, given the tendency to experience rejection by their peers. Counseling and medication management can be helpful to such individuals.
What is the treatment for these disorders?
Any treatment for individuals falling on the Autism Spectrum Disorder begins with a comprehensive assessment, accurate diagnosis and a treatment plan.
There are numerous options for children within the autism spectrum but most treatment strategies are based in "Applied Behavioral Analysis" (ABA). ABA is defined as the science in which the principles of the analysis of behavior are applied systematically to improve socially significant behavior, and in which experimentation is used to identify the variables responsible for change in behavior. Within the ASD, ABA is the process of analyzing the steps necessary to complete a given task as well as reinforcers which help increase the likelihood that the preferred behavior will occur.
The information that is gathered is then used to develop "discreet trial programs" in which the child learns to take individual steps toward task completion. An example would be having the child identify an object–such as a ball–so they can work toward the goal of asking for the object. In this manner the child learns through repeated trials the steps and substeps for each identified discreet trial activity that leads up to learning the complete task.
Other treatments include the TEACCH program, Relational Development Therapy and Greenspan methods–all of which utilize various strategies and floor-play to facilitate social skill development in the child. All of these treatments are typically supported by the results of the research, especially with discrete trials.
Various food and supplement-related interventions include eliminating casein and gluton (wheat and dairy products) from the diet. While some parents report positive results from these interventions, overall the research results have proven inconclusive.
A variety of social skills development programs are utilized for children with Asperger's Disorder. Redirecting a child into more appropriate behavior–such as a child who rocks being directed to use a rocking chair instead–is a method of dealing with self-stimulatory behavior. Sleep and food-related challenges are also targeted with behavioral approaches. In short, a wide variety of treatment options are tailored to take advantage of the child's strengths while identifying and targeting weaknesses.
Clinicians are not limited to one approach but are aware and trained in most or all treatment modalities to meet the needs of a child diagnosed with autism.
Are medications helpful?
There is no cure for Autism Spectrum Disorder. However, studies have shown that various medications may help children with ASD. In combination with educational and other behavioral interventions, certain medicines can help reduce some of the target behaviors associated with autism and other ASD diagnoses. So called "co-morbid" conditions–such as ADHD, Tourette's Disorder, Depression and OCD–are all treatable by medications.
Neuroleptics (major tranquilizers) such as Risperdal, Haldol, Zyprexa, Seroquel and Abilify have been found to reduce withdrawal levels, stereotypic movements, aggressiveness and self-abuse. Stimulants such as Adderall, Metadate, Concerta, Focalin, Ritalin and Methylin have been clinically found to reduce levels of poor concentration, over activity, distractibility and impulsivity. Obsessive-compulsive and tic-like behaviors–as well as some forms of self-injury–have been successfully treated with medicines such as Cloidine, Tenex, Prozac, Luvox and Anafranil. Antidepressants and mood stabilizers like Lithium and Depakote have shown to reduce signs of depression and labile moods. There are also beta-bocker type medications (like Inderal) while usually indicated for the treatment of hypertension, have been shown to reduce aggression in some children with ASD.
Obviously evaluations of children on the autism spectrum should include a thorough medical history, physical examination, neurological testing as well as vision and hearing testing to rule out other genetic disorders associated with autism. These disorders include Fragile X syndrome (tuberous sclerosis), hearing loss and seizure disorders. A DNA test for Fragile X syndrome is available as are other genetic screening and chromosomal analytic tests to rule out genetically inherited metabolic disorders.
What is "wraparound"?
The wraparound process is an intensive, individualized care management process for children with serious or complex needs. Wraparound was initially developed in the 1980s as a means for maintaining youth with the most serious emotional and behavioral problems in their home and community. During the wraparound process, a team of individuals who are relevant to the well-being of the child or youth (family members, service providers, agency representatives, etc.) collaboratively develop an individualized plan of care, implement this plan, and evaluate success over time.
The wraparound plan typically includes formal services and interventions, together with community services and interpersonal support and assistance provided by friends, family and other people drawn from the family’s social networks. The team convenes frequently to measure the plan’s components against relevant indicators of success. Plan components and strategies are revised when outcomes are not being achieved.
Team members includes a Mobile Therapist (MT, doctoral level), Behavioral Specialist Consultant (BSC, master's level) and Therapeutic Staff Support (TSS, bachelor's level). The MT is used to provide counseling and overseeing the behavioral plan. The BSC has specialized training (such as Applied Behavioral Analysis, or ABA) in treating children with developmental disorders. The TSS carries out the day-to-day treatment necessary to assist the autistic child lean adaptive skills. It is the TSS who works one-on-one with the autistic or ASD child implementing interventions on behavior plan driven targeted behaviors.
Wraparound services are state-funded through Medical Assistance. Parents can obtain Medical Assistance–regardless of income–through what is called a "loophole". You can contact Southwestern Human Services at (412) 831-1223 for more information about wraparound and obtaining Medical Assistance.
What is "Act 62"?
Act 62 is a new marriage between public and private insurers that requires many private insurers to cover the first $36,000 of autism assessment and other services per year. The Pennsylvania Department of Public Welfare covers the cost for those without insurance and picks up any additional costs after $36,000 families affected by ASD may have. Act 62–which took effect July 1, 2009–takes the pressure of the public system and puts a fair share on the private carriers.
What is the long-term outlook for a child on the autism spectrum?
While outcome is difficult to predict, many children make incredible progress. Some children, after a few years of treatment, are nearly indistinguishable from their peers. However, other children can continue to demonstrate significant symptoms.
Regardless, practically all children provided with intensive treatment display progress such as improved eye contact or carrying on a conversation using multiple-word phrases. These improvements might seem little but over time add up to substantial advances that allow for a higher degree of functioning in the home, community and school. Accordingly, the necessity for intensive and long-term treatment is paramount.