Parents naturally obsess over an infant during the first year of life. The joys and concerns are often myriad as the newborn occupies practically all of the parent’s waking hours. A developmental disability, however, may be one of the worst fears a parent/caregiver may encounter. Autism Spectrum Disorder (ASD) is a dreaded diagnosis that afflicts one percent of American children ages three to 17 years.
April is Autism Awareness Month and parents whose child may be among the 1 in 68 births classified with this disorder are working more than ever to discover how they can best care for their little one who may fall behind early in reaching developmental milestones. The city of Lancaster played its part with its sixth annual “Light It Up Blue” fundraising walk earlier this month at Lancaster Municipal Stadium. Proceeds helped to provide support services for affected families in the Antelope Valley.
Autism is America’s fastest growing developmental disability with cases having increased substantially over the past 10 years. The Autism Society of America has reported that one in 1.5 million Americans live with autism with estimated costs for families have surpassing $60 billion annually. This figure is expected to increase $200 billion to $400 billion by 2024. Neurologists remain at a loss at what causes autism, but the cost over a lifetime could amount to as much as $3.2 million per person.
It is generally accepted that autism is caused by abnormalities in brain structure and function. Brain scans have shown differences in the shape/structure of the brain in children with autism versus the “brain shape/structure” of so-called “neurotypical” children or, those who are not diagnosed with autism but show a marked intellectual or developmental difference. In some families, there is a pattern of autism or related disabilities, further supporting a theory that autism has a genetic basis. No gene has been identified as causing ASD and although some children are born with a susceptibility for ASD, scientists have yet to identify a single “trigger” that can provide an early indication of autism. Researchers at the Autism Society continue to search for irregular segments of a genetic code that children with autism may have inherited.
The Centers for Disease Control and Prevention (CDC) announced last month that the rates of autism diagnosis has increased more than 30 percent since 2008. Though a diagnosis does not always mean services (i.e. screenings, interventions) are required, the earlier that action is taken, the better [outcome] may be enhanced for the individual.
“Far too many unnecessary obstacles are placed in the path of many individuals living with ASD, especially adults,” said Scott Badesch, president and CEO of the Autism Society of America. “Better services and supports are needed; the challenges in meeting [high] costs are overwhelming for most families, and the need for equity and increased family services is paramount.” Badesch added that the United States must continue to “close the gaps” in autism services in communities of color, and advocates for a national commitment to be “more responsive” to the daily needs of persons living with autism.
Scientists are investigating the possibility that, under certain conditions, a “cluster” of unstable genes may interfere with brain development, resulting in autism. Other research is looking into problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances or exposure to environmental chemicals, the latter studies only offering anecdotal findings resulting in little empirical evidence.
Autism appears to occur more frequently among persons who have specific medical conditions, including “Fragile X Syndrome” (a genetic condition involving changes in part of the “X” chromosome), tuberous sclerosis (a rare, multi-system genetic disease that causes benign tumors to grow in the brain), congenital rubella syndrome and untreated “phenylketonuria” in which a newborn lacks the ability to properly break down the amino acid phenylalanine. Also, harmful substances ingested by the mother during pregnancy have of late been associated with an increased risk of autism. Neurologists are hesitant to point to environmental toxins (e.g. heavy metals like mercury) that may be more prevalent today than in the past, because of the decades of observation necessary to make that leap in diagnosis. However, persons living with autism or those at risk may be especially vulnerable as their ability to metabolize and detoxify these exposures can be compromised.
Linked to prenatal, obstetric conditions
The risk of developing autism is associated with several prenatal factors, among them, advanced age in either parent, diabetes, frequent internal bleeding and ingestion of psychiatric drugs by the mother during pregnancy. Also, prenatal exposure to cytomegalovirus (enlarged lymph nodes in the neck resulting in chronic fatigue), and rubella can lead to harm within a pregnant woman’s immune response system and thereby increase the risk for autism. Thyroid problems leading to thyroxine (an iodine-containing hormone that increases the rate of cell metabolism) deficiency in the mother during weeks eight through 12 of pregnancy have been postulated to produce changes in the fetal brain to possibly lead to autism. As well, it has long been hypothesized that folic acid taken during pregnancy could play a role. Prenatal stress and “fetal testosterone theory” hypothesizes that higher rates of testosterone in the amniotic fluid of mothers can diminish “communication” or “empathy” in the developing brain and emphasize “male” traits over “female” traits, thereby leading the brain to later “systemize” rather than “empathize” in interacting with people.
Autism can be associated with some perinatal and obstetric conditions. A 2007 review by the Autism Society of risk factors found associated obstetric conditions that included low birth weight and gestation duration as possible factors leading to autism. The study revealed that premature infants who survived cerebellar hemorrhagic injury (bleeding in the brain that injures the cerebellum) were significantly more likely to show signs of the disorder.
Autism is not respective of any individual racial or ethnic group. In 2010, however, the CDC reported that the diagnosis of ASD was, in general, delayed by almost two years among African American children (roughly 7 1/2 years old) as compared to White children at 5 1/2 years of age. In 2012, the CDC found the largest increases in autism rates over time were among Latino children (110 percent) followed by Black children at 91 percent. “We suspect that some of this increase is due to greater awareness and better identification among these groups,” the CDC stated. “However, this finding explains only part of the increase over time, as more children are being identified in all groups.”
Those persons charged with caring for an autistic child may appear to outsiders as having a lifetime, uphill fight in trying to provide the necessities of child rearing to someone who may never quite grasp the daily aspects of an “ordinary” life. Celia Madrigal, a family support provider with the Family Focus Resource Center in Lancaster, is rearing two autistic children. The oldest boy, Christian, 16, has been diagnosed with “moderate-to-severe” autism, while the youngest, Diego, seven, has “mild” autism. In both instances, Madrigal says living a “regular” life in terms of a typical parent-child relationship is not always possible.
“I suppose our lives changed with Christian’s diagnosis,” Madrigal said. “Since then I have had to become aware of the needs and special services required for him. Diego functions more quickly…I found that I don’t have to repeat myself so often with him. Autism absorbs you. You’re always concerned with how to best ‘socialize’ the child…how to make every day as normal as possible and it is not always easy. Something as simple as breakfast can turn into an ordeal. A fly might buzz in and out of the kitchen and that little thing can sometimes prevent Christian from eating. He’ll become confused, irritated, frustrated and will sometimes yell or scream. He has to be attended to and it is difficult sometimes, but not impossible.”
Madrigal said caregivers must learn and practice patience. Her biggest learning curve with Christian, she said, was realizing that she usually won’t get any feedback when trying to instruct him—from putting on his clothes to feeding himself—because he cannot master certain concepts/responsibilities that other parents may take for granted in children. Learning to manage stress is another aspect of caregiving that Madrigal says is vital for both parent and child.
“From morning to bedtime, it is a struggle. You have to stay strong for their sake,” she said. “Have some hobbies for yourself, maintain your faith and do not give up. There are many support groups available that offer programs and advice to help you with your responsibilities as a caregiver. My kids are my life…I love them so much!”
Asperger’s Disorder (AD) is often linked with autism, but is a separate neurological disorder. Symptoms may mimic austistic-like behavior but they are considered to be a “less severe” indicators of ASD. First, there is an absence of language delays; children with AD may only be mildly affected and frequently have good language skills. To the untrained observer, a child with AD may seem like a normal child who often behaves differently such as being “aloof” at times or appearing to be uninterested in others. Children with AD usually want to “fit in” and have interaction with others, but they don’t know how to do it. Sometimes they may be awkward socially and not understand conventional social rules. They may demonstrate a lack of empathy, have limited eye contact or appear unengaged at times in conversation and generally not understand the use of hand gestures, facial expression or voice inflection.
The antiquated term “idiot savant” related previously to children with AD rather than ASD. Children with AD demonstrate great—if not obsessive—interest in a particular subject. Such children frequently like to collect categories of things (rocks, marbles, bottle caps) and they may be quite proficient in knowledge categories of information such as sports statistics, Latin names of dinosaurs, horticultural categories, etc., and maintain good rote memory skills. Their biggest problem is a profound difficulty with abstract concepts. While some persons with AD have intellectual disabilities, by definition a person with AD cannot possess a “clinically significant” cognitive delay because they reportedly possess an average to above-average intelligence. AD does delay development of motor skills, as children with this disorder may sometimes appear clumsy or awkward.
20-year increase in Asperger’s Disorder
Like ASD, the awareness of AD has increased significantly during the past 20 years; scientists are not sure if physicians are finding a larger prevalence, or if it is the result of more societal attention. According to the latest DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) criteria for AD, the child must have “severe and sustained impairment in social interaction, and the development of restricted, repetitive patterns of behavior, interests and activities that might cause clinically significant impairment in social, occupational or other important areas of functioning.” The Autism Society reports that early diagnosis is important as children with AD who are diagnosed and treated early have an increased chance of being successful in school and eventually living independently.
Some persons with AD may appear to have an intellectual disability, a sensory integration disorder (the brain cannot integrate certain information received from the body’s five basic sensor systems), or may experience problems with hearing and vision. The problems can co-occur with autism and reveal medical conditions/syndromes that can present symptoms that people may confuse with autism.
There are many differences between a medical diagnosis and an educational determination (or school evaluation of a disability). According to the Diagnostic and Statistical Manual of the American Psychological Association, a medical diagnosis of ASD is primarily made by a physician, whereas an educational determination is made by a multidisciplinary evaluation team comprised of various school professionals. The latter observations/results are then reviewed by qualified professionals and the parents to determine whether a student qualifies for special education and related services under the Individuals with Disabilities Education Act.
For generations, brain experts as well as well as the “untrained eye” have attempted to pinpoint early the symptoms of autism. The Autism Society has relied generally on the following five “red flags” to aid an early diagnosis, though they do not necessarily mean the child is autistic:
—A baby does not “babble/coo” by the first 12 months;
—A baby does not gesture (point, wave, grasp) by 12 months;
—A child does not say single words by 16 months;
—A child does not say two-word phrases on his/her own by 24 months;
—A child who demonstrates a loss of language and/or social skills at any age.
If any of these symptoms appear, the Autism Society recommends that the child undergo further evaluations by a multi-diciplinary team that may include a neurologist, a psychologist, a developmental pediatrician, a speech/language therapist and a learning consultant.
iPads may increase communication skills
Today there are more opportunities for autistic children to learn communication skills and understand complex situations. When the iPad debuted in 2010, it was hailed by some parents as a type of miracle device. They found they could create custom stories that were suited for their child’s cognitive ability. Today, app creators, neurologists and parents/caregivers are exploring new ways of using computer technology to better facilitate learning and interpersonal communication. While the iPad remains a technological tool and does not produce miracles, some parents have found the device can instill more independence in the autistic child because they can interact directly with content—without having to navigate a mouse—and it can break up complex concepts into more easily recognized segments. Using pop-up prompts, the various applications can create familiar situations that kids with autism may have trouble with, and they are written so that these children can relate to them.
The new apps can help autistic children navigate themselves through tricky situations by inventing a way of solving the problem. The idea is to teach social and emotional skills through funny plots. An example is “Flummox and Friends,” a hybrid of an app and a television show for kids on the autism spectrum, serving as a live-action comedy show that aims to educate children by being entertaining rather than condescending. Tablets are beginning to replace a number of communication tools for parents and educators, including homemade visual aids, expensive communication devices and, for many years, televisions. Also, the Siri application for IPhone 4S may assist with verbal articulation because of its “speech recognition” technology. The new electronic gadgets have become a more affordable alternative to the dedicated augmented-communication devices some children use to communicate. For children who don’t speak, some parents have found that the tablets’ voice-output apps can change the communication dynamic.
There are a number of ASD and AD support groups in the Antelope Valley. For more information, call the Los Angeles chapter of the Autism Society at (562) 804-5556 or visit www.autism-society.org/about-us/national-autism-awareness-month. Visit the Antelope Valley chapter of the Family Focus Resource Center at email@example.com.