Asperger’s Syndrome is a “high functioning” form of Autism Spectrum Disorder. A diagnosis of Asperger’s Syndrome can be synonymous with a diagnosis of High Functioning Autism (HFA) and individuals diagnosed with AS, HFA, and other closely-related neurological disorders benefit equally from the support and service provided by Portland Aspergers Network.
Studies conclude that the incidence of Asperger’s Syndrome has increased by epidemic proportions in recent years. In the past two decades the ratio of an Autistic Spectrum Disorder diagnosis has escalated from one child in ten thousand to one child in eighty-eight (1:54 in boys and 1:252 girls).
There is no cure for AS. The cause remains unknown. There is a prevailing belief that the combination of genetic factors and environmental triggers contributes to the probability of diagnosis. Regardless of its origin—its existence is a painfully real and rapidly growing problem in every country in the world. Attention to this issue is imperative as this growing sect of the world’s population emerges into adulthood.
The Autism Spectrum
As a type of Autism Spectrum Disorder in which the term “spectrum” refers to both the variety and severity of symptoms, the characteristics and challenges of Asperger’s Syndrome vary from one individual to the next. A person diagnosed with AS typically hosts a combination of autistic symptoms at varying levels of disability.
AS is categorized primarily as a social and communication disorder but is rarely unaccompanied by the physical impediments of Autism and the psychological consequences of anxiety and depression and other mental disorders. It is known that key areas of the brain related to processing emotions are affected and as a result subtle messages transmitted in social interaction can be a missed. This causes difficulty in processing social behavior and is expressed as difficulty in social interaction.
Multiple factors cause wide variance in the age of diagnosis—not the least of which is limited public awareness and a propensity for mis-diagnosis. Family Physicians and Educational Specialists have only recently become familiar with signs of higher functioning Autism. As with most neurological abnormalities, there is no medical test available to confirm AS. Though early intervention remains the most important tool in the management of Autism Spectrum Disorder, an individual accurately diagnosed with AS or HFA has often exceeded that window of age.
Children and adults affected by AS have average to above average intelligence. They typically have preoccupations and subjects of intense interest in which they may show special talent and extraordinary skill. Early diagnosis is often prevented by the fact that most individuals differ little if any from other children in physical appearance. Still others may exhibit motor delays, physical awkwardness, poor muscle tone, problems with balance and coordination, or the repetitive self-stimulating behaviors more commonly associated with classic autism. As a rule, the more the disorder presents itself through physical symptoms and severe behaviors, the earlier a diagnosis can be considered.
For those that either lack physical symptoms in infancy or have yet to reveal such, the expected development of communication in the toddler stage is another opportunity for an autistic disorder to present itself. Many children with classic Autism are diagnosed during this stage due to strange social behavior, lack of speech, the emergence of echolalia, or regressions in such areas as vocabulary, eye contact, or shows of affection and engagement. In frequent cases of Asperger’s Syndrome, speech takes a different turn.
Many children with AS will develop speech at an advanced and rapid rate. They may skip the babbling or monosyllabic stepping stones of “baby talk” and instantaneously duplicate adult language. In a relatively short period of weeks, their abilities in speech may transition from zero words to full sentences. Children with AS will often speak with an odd sense of formality, employing an expansive vocabulary with a preference for technical terminology. The very complex nature of AS may lead some parents to believe not only that they have a typically developing child, but one which exhibits traits of a genius.
One of the key obstacles in Autism Spectrum Disorder is sensory integration. Issues involving sensory, and tactile perception as well as smell, food textures, and taste. Sensory problems cause the inability to filter, recognize, or organize peripheral noise or extraneous information. Examples of common elements that could be unbearable, distracting, or confusing to a student with AS are texture of clothing, a flickering of fluorescent lights, a rustling of papers, reflections in window glass, the sight of polished fingernails, or the residual smell of a classmate’s laundry detergent. This sensory input may be perceived at overpowering levels and lies at the root of attention deficit for autistic individuals.
Many researchers believe it is the distortion of sensory information that drives all other autistic symptoms including the phenomenon of processing delay. Parents commonly attribute the behavioral manifestation of “meltdown” to a series of “sensory events” and unexpected changes in routine that require greater than usual processing attention. A sensory event relates to new, novel, or overwhelming stimuli that need to be assimilated and processed at a careful rate. An essential shut down of other faculties may be required for this to happen.
Processing delay is the consequence of an irregularly “wired” mind—inefficiently connected neurological circuitry that results in a complex framework of logic. A frequent analogy compares a neurological-typical brain as proceeding from A to B, whereas the autistic brain may travel from A to C to D to E before finally reaching B. That the autistic brain will arrive at conclusion B with equal or greater success is rarely in question. It is simply a different path of logic. Unfortunately, for people affected by AS, this different albeit dependable path is not geared to the volume-valued pace of modern conformity.
How does Asperger’s Syndrome affect children?
Asperger’s Syndrome affects children in numerous ways. The demands of expressive and receptive processing, managing an onslaught of sensory aggravation, and absorbing and organizing new information can lead to an anxiety-ridden and fatiguing existence. Parents of students with AS are aware that their children are emotionally and physically more exhausted than their siblings or peers at the end of a school day. Homework sessions can bring on a nightly occurrence of explosive distress.
Physical activity is beneficial for the redirection of energy, but physical, social, and instructional obstacles hinder participation in organized recreation. Social inadequacies or embarrassing behaviors at school can result in a dangerous level of depression. Transitions from one environment or activity to the next require preparation, a protracted allowance of time, and an intensity of processing effort on behalf of the affected individual. The simple act of opening a door between rooms or settings can momentarily paralyze an autistic physiology. Where change is the adversary, the autistic person feels little command over life.
Order, schedules, and rituals are often the ways that children with AS maximize control in their world. Children with AS are involuntarily rigid and routine-dependent. Minor upsets in routine can elicit a disproportionate emotional response. Alterations to an established schedule are perceived as a sabotage or threat to a child’s coping mechanism.
When a novelty in schedule is combined with an agitating sensory experience, and impromptu social performance, the behavioral ramifications are daunting. It is of no wonder that birthday parties, vacations, holidays, and school assemblies often lead to the large-scale tantrums and unconscious rages referred to as “meltdowns”. These events require effort, preparedness, and much familiarity before the AS child may learn to enjoy them. The very occasions which bring delight to most students and families can be dreaded events for those impacted by AS.
Early Childhood and Preschool Ages
In Asperger’s Syndrome, symptoms in the area of social and communication development take on interesting characteristics with the progression of age. As a preschooler with AS, missed milestones or social oddities may have gone unnoticed by peers and excused by teachers. As a child of school age, the traits associated with AS begin to fall under increasing ridicule and social scrutiny. Children affected by AS have difficulty reading subtle cues or detecting meaning from tone of voice, facial expression, or body language.
They often avoid or refuse eye contact. They may use overly formal, stilted, or technical speech. They may NOT use appropriate personal boundaries or volume of speech in communicating. Many have a tendency to speak exclusively about subjects of their own interest with little acknowledgement of a partner’s turn in conversation. They can also be very literal-minded, misinterpreting the meaning of some of the most common phrases or casual language.
Elementary and Middle School Years
Peers will ultimately reject these odd manners and undesirable habits. This rejection causes children with AS to become socially frustrated and suffer from low self-esteem. Affected children of all ages enter into a pattern of solitary behavior, an immature sense of social development and peer interaction, and a solid preference for adult company. They are often the targets of bullying and teasing which around the fourth grade and the threshold of puberty becomes very intense. This causes further anxiety, further depression, and a further reluctance to attend school and engage socially. By middle school most students affected by AS require medication to alleviate the symptoms of physical and emotional distress experienced in school.
Asperger’s Syndrome is a disorder characterized by disabling social and communication deficits, painful and/or dysfunctional responses to sensory stimuli, unusual or disruptive behavior, learning disabilities, and physical awkwardness that can include an impaired level of coordination, balance, muscle tone, and motor regulation.
Children with AS are intelligent beings with valuable potential but they are at a significant disadvantage to succeed in mainstream society. Many students with AS are eligible to receive Special Education Services that assist them in educational instruction but these services rarely address the sensory and social dilemmas involved in the daily attendance of school. The most enduring and important source of support for children with AS is the support of their own immediate family.
How does Asperger’s Syndrome affect a family?
While physicians, educators, and developmental specialists are becoming better educated at detecting and evaluating the signs of Asperger’s Syndrome, there are many families still suffering from the consequences of current and past mis-diagnosis. Children with AS may initially seem “typical” in appearance and intelligence. “Typical” traits taken singly can be deceiving. Behaviors often associated with AS can be overlooked in young children, especially in toddlers who are expected to be headstrong, hyperactive, frustrated, and exaggerated in their emotional responses. Being “shy”, overindulged, a victim of the “terrible twos”, or a “typical boy” will always be considered before there is any credence given to developmental concerns. To complicate matters, many symptoms of AS mimic symptoms of other disabilities.
Some symptoms of AS correspond to those of ADD/ADHD, anxiety, depression, Childhood-onset Bipolar Disorder, Dyslexia, Obsessive Compulsive Disorder, Oppositional Defiant Disorder, and Tourette’s Syndrome. To add further confusion, some of the above-mentioned disorders may legitimately coexist with a diagnosis of AS.
A mis-diagnosis is most dangerous where a disorder is managed with the intervention of medication. A misapplied prescription can actually exacerbate the symptoms of a disorder. For all these reasons the diagnosis of AS is often delayed and sorely reached. The delay may cause profound and sometimes permanent damage to a child’s self-esteem and to the well being of a household. Attributing the child’s problems to an erroneous diagnosis, or to “bad” behavior, and poor parenting leaves the whole family feeling frustrated and misunderstood. After years a child may finally receive an appropriate diagnosis of AS and parents are still given little if any resources to improve their family’s quality of life.
As Asperger’s Syndrome is now recognized as being genetic in origin, it is not surprising that some households have more than one child diagnosed with AS, HFA, or other related neurological disorders. Some families have not only children, but adults as parents, grandparents, spouses, or siblings who have inherited the disorder as well. Where the affected individual is a child or adolescent, the nerves of the parents are perpetually on edge.
Parents of a child affected by AS frequently encounter tantrums or rage. They deal with learning disabilities that require extensive homework or home schooling. A life that demands a high expenditure of energy and acute attention to detail is exhausting.
Parents of a child with an autistic disorder operate during waking hours in a hyper-attentive state. They are always “on the alert” for environmental stimuli, changes in routine, or a series of events that could trigger extreme behaviors in their children. For their and their child’s best interests they may need to prevent or react to a crisis level of behavior. They try to keep one step ahead of the game, surveying surroundings, measuring risk, considering past events, and predicting their child’s potential reaction to every element of change. This requires rapid problem solving, uncommon patience, and a concentrated alertness of situation and circumstance. For obvious reasons the presence of AS seriously curtails social opportunities for the family.
Parents of children with AS are accustomed to disapproving looks, ignorant commentary, and suggestions of poor parenting. Ignoring stares and the reaction of strangers is a management tool attained with time. Public outings entail points of impasse when parents struggle to decide on how best to acknowledge disruptive or inappropriate behavior.
Parents are conflicted by the temptation to relieve embarrassment with a “medical excuse” and by the need to protect their child’s dignity from a broadcast label. With the integrity-robbing practice of attributing all behaviors to the disability, a parent stands to devalue the child’s need for self-regulation. For higher-functioning autistic individuals “mainstreaming” in school and society is considered optimal but it risks a higher level of social pressure which should be under continuous estimation.
Love and Affection
Children affected by AS are naturally disposed to be sensitive, honest, and approval seeking. Avowedly puzzling behavior has for years encouraged a myth which assumes autistic children neither feel for or care about their fellow humans. This is highly untrue. They do have a desire to “fit in” and play with peers and they are reinforced by love. However, their neurological make-up lacks the fundamentals of abstract thinking, random communication, and lacks the perception of subtle social interaction. From an early age, this makes it inherently difficult to cultivate meaningful relationships, friendships, and sometimes, parental attachment.
In addition to the continual stress, the seeming lack of parental attachment can be disheartening to parents who are otherwise expected to be the child’s most interested and energetic advocate.
When Asperger’s Syndrome is present in a family, there are gains, regressions, daily ordeals, and happy victories as there are in any household. But every parent with an AS child would agree that these states cycle with a very different velocity and intensity. Fatigue, excitement, frustration, and challenge are feelings repeatedly expressed by parents who witness this course of development. By instinct, parents love, protect, and nurture their children.
Through resourcefulness, persistence, and pursuit of advice, parents endeavor to provide their children with what they need to thrive.