The Autism Society of America defines autism as “a severely incapacitating lifelong developmental disability that typically appears during the first three years of life. The result of neurological disorder that affects the functioning of the brain. Autism behavioral symptoms appear in approximately fifteen out of every 10,000 births. Autism is four times come common in boys than girls. It has been found throughout the world in families of all racial, ethnic, and social backgrounds. No known factors in the psychological environment of a child have been shown to cause autism.”
What Causes Autism?
Medical researchers are exploring different explanations for the various forms of autism. Although one specific cause of autism is not known, current research links autism to biological or neurological differences in the brain. MRI (Magnetic Resonance Imaging) and PET (Positron Emission Tomography) scans show abnormalities in the structure of the brain, with significant differences within the cerebellum, including the size and number of Purkinje cells. In some families there appears to be a pattern of autism or related disabilities, which suggests there may be a genetic basis to the disorder, although at this time no one gene has been directly linked with autism.
Several older theories about the cause of autism have been now proven false. Autism is not a mental illness. Children with autism are not unruly kids, who choose not to behave. Autism is not caused by bad parenting. Furthermore, no known psychological factors in the development of the child have been shown to cause autism.
Who is Affected by Autism?
Autism affects everyone who knows someone with the disorder. It is four times more prevalent in boys than girls and knows no racial, ethnic, or social boundaries. Family income, lifestyle, and educational levels do not affect the chance of autism’s occurrence.
Autism currently affects over 400,000 individuals in the U.S. and 1 in every 500 children born today. The 3rd most common developmental disorder, autism is more prevalent than Down syndrome, childhood cancer or cystic fibrosis – at an annual cost to our nation of over 13 billion. Yet it receives less than 5% of the funding of other less common diseases.
Over one half million people in the U.S. today have some form of autism. Its prevalence rate now places it as the third most common developmental disability – more common than Down’s syndrome. Yet the majority of the public, including many professionals in the medical, educational, and vocational fields are still unaware of how autism affects people and how to work effectively with individuals with autism.
What Are the Characteristics of Autism?
Children with autism often appear relatively normal in their development until the age of 24-30 months, when parents may notice delays in language, play, or social interaction.
There is no “medical” test, such as a blood test or X-ray, which can show who has autism and who does not. Autism is diagnosed when professionals familiar with the disorder spend time with a person to look at the way the person communicates with others, understands and responds to social interactions, and reacts to other things in the environment. People with autism often have:
1. Delayed or unusual language patterns.
2. Difficulty interacting socially with their peers.
3. Unusual and/or restricted interests and sensory responses.
The disorder makes it hard for them to communicate with others and relate to the outside world. They may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resist any changes in routines. In some cases, aggressive and/or self-injurious behavior may be present.
Autism impacts the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and nonverbal communication, social interactions, and leisure or play activities.
How is Autism Diagnosed?
There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observations of the child’s communication, behavior, and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, a doctor may complete various medical tests to rule out other possible causes.
Diagnosis is difficult for a practitioner with limited training or exposure to autism, since the characteristics of the disorder vary so much. Locating a medical specialist or a diagnostician who has experience with autism is most important. Ideally a child should be evaluated by a multidisciplinary team which may include a neurologist, psychologist, and developmental pediatrician, speech/language therapist, learning consultant or other professionals knowledgeable about autism. Several diagnostic tools have been developed over the past few years to help professionals make an accurate autism diagnosis:
• CHAT Checklist for Autism in Toddlers
• CARS Childhood Autism Rating Scale
• PIA Parent Interviews for Autism
• GARS Gilliam Autism Rating Scale
• BRIAC Behavior Rating Instrument for Autistic and other Atypical Children
A brief observation in a single setting cannot present a true picture of an individual’s abilities and behaviors. At first glance, the person with autism may appear to have mental retardation, a behavior disorder, or even problems with hearing. However, it is important also to distinguish autism from other conditions, since an accurate diagnosis can provide the basis for building an appropriate and effective educational and treatment program.
While no one can predict the future, we do know that some adults with autism live and work independently in the community, while others depend on the support of family and professionals. Adults with autism can benefit from vocational training to provide them with the skills needed for obtaining jobs, in addition to social and recreational programs. Adults with autism may live in a variety of residential settings, ranging from independent home or apartments to group homes, supervised apartment settings, living with other family members to more structured residential care.
Is There More Than One Type of Autism?
Autism is often referred to as a spectrum disorder, meaning that the symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviors, children and adults can exhibit any combination of the behaviors in any degree of severity. Two children, both with a diagnosis of autism, can act very differently from one another.
Professionals utilize a diagnostic handbook, the Diagnostic and Statistical Manual now in its fourth edition (DSM-IV). Several autism-related disorders are grouped under the broad heading “Pervasive Developmental Disorder” or PDD: Autism, PDD-NOS (pervasive developmental disorder, not otherwise specified), Asperger’s syndrome and Rett’s syndrome. These four diagnoses are used differently by professionals to describe individuals who manifest some, but not all, of the autism characteristics.
The diagnosis of autism is made when a specified number of characteristics listed in the DSM-IV are present, in ranges inappropriate for the child’s age. In contrast, a diagnosis of PDD-NOS may be made when a child exhibits fewer symptoms than in autism, although those symptoms may be exactly the same as a child with an autism diagnosis. Asperger’s and Rett’s syndrome display the most marked differences from autism.
Therefore, most professional will agree that there is no standard “type” or “typical” person with autism. Parents may hear more than one label applied to the same child: autistic-like, learning disabled with autistic tendencies, high functioning or low functioning autism. These labels don’t describe differences between the children as much as they indicate differences between the professionals’ training, vocabulary, and exposure to autism.
The differences in children’s behaviors are often very subtle. Each diagnosis relies on observation of the child and the whether or not the professional is well educated on autism will certainly affect which label is used. Many professionals believe that the distinction between autism and PDD-NOS is not significant. Some believe they are “sparing” the parents by giving a diagnosis of PDD-NOS rather than autism. Many professionals still argue whether or not Asperger’s is really a form of autism. What is most important to understand is that whatever the autism diagnosis, children are likely to benefit from similar approaches to education and treatment.
Is There a Cure for Autism?
Our understanding of autism has grown tremendously since it was first described in 1943. Some of the earlier searches for “cures” now seem unrealistic in terms of today’s understanding of brain-based disorders. To cure means “to restore to health, soundness, or normality.” In the medical sense, there is no cure for the differences in the brain which result in autism.
However, we’re finding better ways to understand the disorder and help people cope with the various symptoms of the disability. Some of these symptoms may lessen as the child ages; others may disappear altogether. With appropriate intervention, many of the autism behaviors can be positively changed, even to the point that the child or adult may appear to the untrained person to no longer have autism. The majority of children and adults will, however, continue to exhibit some symptoms of autism to some degree throughout their entire lives.
What are the Most Effective Approaches for Treating Autism?
Because of the spectrum nature of autism and the many behavior combinations which can occur, no one approach is effective in alleviating symptoms of autism in all cases. Various types of therapies are available, including behavior modification, speech/language therapy, sensory integration, vision therapy, music therapy, auditory training, medications, and dietary interventions, among others.
Experience has shown that individuals with autism respond well to a highly structured, specialized education and behavior modification program, tailored to the individual needs of the person. A well designed intervention approach will include some level of communication therapy, social skill development, sensory impairment therapy and behavior modification at a minimum, delivered by autism trained professionals in a consistent, comprehensive, and coordinated manner. The more severe challenges of some children with autism may be best addressed by a structured education and behavior program which contains a 1:1 teacher to student ratio or small group environment.
Students with autism should have training in vocational skills and community living skills at the earliest possible age. Learning to cross a street safely, to make a simple purchase or to ask assistance when needed are critical skills, and may be difficult, even for those with average intelligence levels. Tasks that enhance the person’s independence, give more opportunity for personal choice, or allow more freedom in the community are important.
To be effective, any approach should be flexible in nature, rely on positive reinforcement, be reevaluated on a regular basis, and provide a smooth transition from home to school to community environments. A good program will also incorporate training and support systems for the caregivers as well. Rarely can a family, classroom teacher or other caregiver provide effective habilitation for a person with autism unless offered consultation or in-service training by a specialist knowledgeable about the disability.