Autism - A Growing Cause of Disability by Homer Page

I, along with a number of other adults with disabilities, were invited to speak at a summer camp for youth with disabilities in July of 2009. We were asked to serve as mentors to the young people, and to appear on a panel and tell the kids about our lives, education, and work, if we were old enough to have careers. One of my colleagues was a student at a state university in the region. Her name was Elizabeth, and her disability was autism. While she was not very comfortable speaking to the group and made a rather short presentation, she spoke well in a small group, and at lunch she was very helpful to me, (I am blind), in getting my food from a cafeteria line. Autism is a growing cause of disability, and for that reason, as well as the basic friendliness and strength shown by this young woman, it may be helpful to examine this developmental disability, as I viewed it in her daily life.

Autism is a relatively new diagnosis. Two doctors, Dr. Leo Kanner and Dr. Andreas Asperger described and named the condition about 60 years ago. Autism has unique qualities in each individual who exhibits the condition, but there are five major categories. Because of these variants, the general condition is known as, Autism Spectrum Disorder, (ASD) Perhaps the variant that we are most familiar with is Asperger’s Syndrome. Although children who have autism show differing levels of involvement with the disorder, one thing which they all have in common is an inability to have normal social relationships with others. They display abnormal use of language, fail to play with their peers, do not make eye contact, and develop eccentric and obsessive play activities. Persons who have autism have a wide range of intelligence, physical abilities, and temperaments. They may be passive or active, sensitive or not to external stimuli, interested or not in learning, but in each case the specific trait strays from the usual developmental path. The person who is autistic must receive extensive training in order to reprogram his or her brain to restructure inappropriate personal behavior so that it will fit into an appropriate social context. For those individuals, who as adults, live successful and integrated lives, as does Elizabeth, they must learn to monitor their own behavior to control non-social behavior, and they must develop strategies for dealing with social stresses that drive them to withdraw into autistic responses.

The Center on Disease Control, (CDC), estimates that one new born in 166 will develop an ASD. This rate is higher than Juvenile Diabetes, Cystic Fibrosis, or Down’s Syndrome. ASDs are developmental disabilities. This means that they occur before eighteen years of age, interfere with the normal development of the individual, and limit major life activities. An ASD may not be fully manifested until a child is three to five years of age. Although symptoms are often recognizable in the first year. Most frequently the symptoms begin around nineteen months, although Elizabeth told me that her symptoms began, when she was eight. The child may appear to develop normally until the on-set of the symptoms of autism. Than the child regresses, loosing language, social and physical skills, and the ability to engage in the world of others. At this point any hope for improvement largely depends on the intelligent commitment of significant adults to become enduring advocates for the child.

We really don’t know what causes autism, but there seems to be a strong genetic connection. Other theories do exist, but there is little evidence to support them. One early theory that has been disproved located the cause in cold mothers, who could not bond with their infant. A more recent theory which has also been discounted identified the mercury compound, thimerosol, used in childhood vaccines, as the factor that has led to the increase in the occurrence of ASDs. No matter the cause, however, researchers have found that there are abnormalities in the development of the brain in persons with autism. The location in the brain, where facial recognition occurs, is less well-developed, and other areas which control communications and language show imperfect formation. Some of the most affective rehabilitation focuses on reprogramming these deficit areas. One of these techniques is known as Applied Behavioral Adjustment, (ABA).

ABA is a very intense procedure. The treatment may involve the child in up to 40 hours a week of therapy. The technique uses positive reinforcement for specific, very focused tasks, such as looking at an object held by the therapist. Parents work with the ABA therapist to insure consistency at home, and other therapies, such as occupational and physical therapy or added to work on other developmental areas. Speech therapy is often added, depending on the child’s specific need. It is believed that a comprehensive approach, which uses a consistent methodology, can reprogram the brain to overcome many of the developmental problems which the child manifests.

ABA is not the only treatment modality available for children with autism. It is crucial that parent-advocates inform themselves about which approach will best meet the needs of their child and follow through to see that it is implemented. Karen Siff Exkorn is an example of an excellent parent-advocate. She has written a book, entitled, The Autism Sourcebook: Everything You Need to Know about Diagnosis, Treatment, Coping, and Healing--From a Mother whose Child Has Autism and Recovered. Ms. Exkorn’s son, Jake, seemed to be developing normally, until he was about nineteen months old. At that point he rapidly regressed, loosing language, shunning physical contact, and showing obsessive and ritualistic behavior. Ms. Exkorn tells the story of her and her husband’s struggle to accept the reality of their son’s disability, find affective treatment, cope with their changed lives, and fight the battles needed to insure that Jake would receive the opportunity to develop as fully as he can. She acknowledges that there is no cure for autism, but she affirms that there is healing. The key to healing is acceptance. The child must learn to accept himself or herself, the family must accept the child and the reality of having a member with a disability, and everyone must accept that autism is a life-long condition that requires continuing adjustments throughout ones life. Karen Exkorn has become an advocate for children and families facing the challenge of an ASD. She is knowledgeable and articulate. Her sourcebook is a must-read for anyone who must cope with an ASD, or for anyone who just wants to understand this condition a little better.

Many specialized opportunities for children with ASDs and their families are now available. Disability Media Inc, (DMI), the publisher of this article, has long had a scholarship program for children with disabilities who wish to attend a summer camp. This summer we sponsored three campers who attended the Christo Vive camp in Wisconsin. Christo Vive is a faith based camp that serves children with ASDs. Parents report in their applications that this experience allows their children to have an experience with other children who have autism, an experience that they do not have throughout the rest of the year. The camp matches children with ASDs with kids who are not disabled, on a one to one basis. The camp provides children with the opportunity to meet other persons with ASDs, while at the same time maintaining an integrated setting. It provides its program in a faith based setting, which is also important for the families who participate.

Autism is a leading cause of developmental disabilities among our nation’s children and adults. It has no cure, but healing does occur. Elizabeth is a wonderful example of how persons with an ASD can live an integrated and productive life. She attends college, participates in support groups, serves as an advocate and mentor for younger persons, and last winter went to her state legislature to advocate for passage of a bill which addressed the needs of persons with autism. The bill did not pass, but she vows that she and her colleagues will be back next year. We are learning that with appropriate treatment in childhood and self-advocacy and support in adulthood persons with ASDs can live affective, fulfilling, and productive lives. We need only look to Elizabeth to confirm the reality of the healing that is possible for our colleagues who cope with an ASD.