What is Autism?
The face of autism is not just a bubbly 5 year old boy. Autism includes children and adults, men and woman, those who communicate verbally and non-verbally, those who are scientists and those who are artists, those who would like to live in urban city centers and those who would rather live on a working farm. Autism does not define just one type of person at one age, but a spectrum of gifts and desires across a lifetime.
Autism is the most commonly diagnosed developmental disability, affecting 1 in every 110 children. * Additionally, nearly two thirds of parents caring for their adult child with a disability reported that their loved one has some form of autism.
Those on the autism spectrum are characterized by atypical social interaction skills, variability with verbal and nonverbal communication, unusual and/or repetitive actions, or severely limited activities and interests. These behaviors can range in impact from mildly noticeable to bluntly apparent.
Those with autism often avoid eye contact with other people and, because they take language literally, have difficulty with metaphors, humor, and sarcasm. Interpreting what others are thinking or feeling is challenging because they have difficulty understanding social cues, such as tone of voice or facial expressions. It is a myth that those with autism are unable to feel empathy. Self-advocate Dora Raymaker says, “Just because someone may not express emotions in a way that is recognizable to others does not mean they are not feeling them. I often feel things too deeply and have to run away, not because I am callous, but because I feel so strongly it causes my brain to shut down or freak out.”
Although those with autism think, process, and behave differently than neuro-typical individuals, with support and slight modifications, they can become assets to every community and workforce.
*The Department of Defense estimates it may be as high as 1 in every 94 people.
**Artwork by Madison Prince, Age 21
Scientists aren’t certain what causes autism, but it’s likely that both genetics and environment play a role. Researchers have identified a number of genes associated with the disorder. Studies of people with autism have found irregularities in several regions of the brain. Other studies suggest that people with autism have abnormal levels of serotonin or other neurotransmitters in the brain. These abnormalities suggest that autism could result from the disruption of normal brain development early in fetal development caused by defects in genes that control brain growth and that regulate how neurons communicate with each other. While these findings are intriguing, they are preliminary and require further study. The theory that parental practices are responsible for autism has now been disproved. In February 2009 a special federal court ruled that there was no proven link between certain early childhood vaccines and autism that developed in three children. Many other studies, including by the National Academy of Sciences, have shown that there is no link between childhood vaccination and autism.
Autism varies widely in its severity and symptoms and may go unrecognized, especially in mildly affected children or when it is masked by more debilitating handicaps. Doctors rely on a core group of behaviors to alert them to the possibility of a diagnosis of autism. These behaviors are:
- impaired ability to make friends with peers
- impaired ability to initiate or sustain a conversation with others
- absence or impairment of imaginative and social play
- stereotyped, repetitive, or unusual use of language
- restricted patterns of interest that are abnormal in intensity or focus
- preoccupation with certain objects or subjects
- inflexible adherence to specific routines or rituals
Doctors will often use a questionnaire or other screening instrument to gather information about a child’s development and behavior. Some screening instruments rely solely on parental observations; others rely on a combination of parent and doctor observations. If screening instruments indicate the possibility of autism, doctors will generally ask for a more comprehensive evaluation.
Autism is a complex disorder. A comprehensive evaluation requires a multidisciplinary team including a psychologist, neurologist, psychiatrist, speech therapist, and other professionals. The team members will conduct a thorough neurological assessment and in-depth cognitive and language testing. Because hearing problems can cause behaviors that could be mistaken for autism, children with delayed speech development should also have their hearing tested. After a thorough evaluation, the team usually meets with parents to explain the results of the evaluation and present the diagnosis.
Children with autistic behaviors but well-developed language skills are often diagnosed with Asperger’s syndrome. Children who develop normally and then suddenly deteriorate between the ages of 3 to 10 years and show marked autistic behaviors may be diagnosed with childhood disintegrative disorder. Girls with autistic symptoms may be suffering from Rett syndrome, a sex-linked genetic disorder characterized by social withdrawal, regressed language skills, and hand wringing.
An important thing for parents, other family members, and caretakers to understand when they hear the diagnosis of autism is that this is an area that has come to the forefront of public and government attention. Research into the causes, prevention and treatment of autism is at an all-time high and many resources are available to assist individuals with autism, members of their families, and others who care for them. Many private organizations, such as the Madison House Foundation, exist for the purpose of helping those impacted by autism.
Nonetheless, there is no cure for autism. Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement. The ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism: impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests. Most professionals agree that the earlier the intervention, the better.
Educational/behavioral interventions: Therapists use highly structured and intensive skill-oriented training sessions to help children develop social and language skills. Family counseling for the parents and siblings of children with autism often helps families cope with the particular challenges of living with an autistic child.
Medications: Doctors often prescribe an antidepressant medication to handle symptoms of anxiety, depression, or obsessive-compulsive disorder. Anti-psychotic medications are used to treat severe behavioral problems. Seizures can be treated with one or more of the anticonvulsant drugs. Stimulant drugs, such as those used for children with attention deficit disorder (ADD), are sometimes used effectively to help decrease impulsivity and hyperactivity.
Other therapies: There are a number of controversial therapies or interventions available for autistic children, but few, if any, are supported by scientific studies. Parents should use caution before adopting any of these treatments.
Public school systems, by law, are required to provide special education for children with autism until the age of 21. As a parent, learn to be an advocate for your child, as you will need to go to bat for him/her continually. Join with support groups to expand your knowledge and to take advantage of the strength in numbers. Even though you will be dealing with an autistic child for the next two decades, realize that your autistic child will spend another sixty years as an autistic adult. Financial planners, insurance experts and attorneys will be as much a part of your team as educators and clinicians. Now is the time to begin planning your estate in order that your child will be all that he or she can be, and live a fulfilling, enviable lifestyle.
• Download this 100 Day Kit from Autism Speaks if your child was just diagnosed with autism.
• Download this Transition Tool Kit from Autism Speaks if your child with autism is transitioning into adulthood.
