Understanding the Challenge of Living with Autism
By Gloria Pearson-Vasey

Autism is only one of the many afflictions that beset humans this side of the Garden of Eden.  However, it is among the most disruptive, causing turmoil and heartache to those it visits as well as to their families.  But for me, autism has become the symbol of all that is multifaceted, puzzling, challenging and beautiful on earth.  It personifies courageous struggle in daily life, and demands empathy, acceptance and activism.  I have witnessed this many times in the families I’ve been privileged to meet and through my own autistic son and family members

Autism is such an enigma that its definition changes from text to text, and sometimes from day to day.  Its causes are similarly elusive.  The condition describes a complex collection of neuro-biological disorders in which messages sent to the brain through the senses are not accurately processed and interpreted.  It is now considered a communication and movement disorder.

When autism was first identified as Kanner Syndrome in the 1940’s, it was believed to affect 4.5 of 10,000 persons in all racial and socio-economic groups.  By the later 1990s, a broader concept of autism spectrum disorder (ASD), which includes Asperger Syndrome, indicates that one in 500 may be affected.

All people with autism disorders share difficulties with relationships and social communication.  Symptoms include language problems, abnormal reactions to sensory stimuli, intolerance of various foods and drugs, sleep disorders, seizures, low muscle tone, movement differences, and obsessions with thoughts, routines, and order.

Persons with the syndrome experience the world from a totally different perspective.  They may think in pictures rather than words, and describe emotions in action words.  Although they experience normal emotions, they have problems relating to the emotional experiences of others.  They also have difficulty connecting what’s happening to their bodies to their internal state.  Because of this, they need frequent reminders about appropriate social behaviour.

People was ASDs may by hypo- or hyper-sensitive in any or all their sensory systems.  They may be unaware of posture or where their bodies are positioned in space.  They may trip, appear clumsy, and have trouble with certain movements.  An autistic individual may have trouble getting started, therefore engaging in whole body movements when beginning a task.  Even planning movement is often difficult.

Difficulty interpreting sensations of touch results in discomfort from contact or texture.  Most autistic persons have overdeveloped peripheral vision and underdeveloped central vision.  People with overdeveloped peripheral vision view objects from the side and tend to flutter their hands or twirl things near their eyes.  In turn, increased peripheral vision impairs central vision which helps us attend and learn.  Eye-tracking is also problematic in ASD, causing trouble in the social settings: if one is focused on looking at another’s mouth, one misses the expression in that person’s eyes.

Hearing distortions are also common.  Autistic persons have trouble filtering sounds and knowing what to attend to.  They can find high level sounds painful and may hear sounds the rest of us can’t hear.  Peculiarities in taste and smell effect what the person eats, where he east, and even where he goes.  He may, for example, avoid a store with strong perfumes, or be repulsed by the smell of people in a crowded room.

Due to severe complications in their lives, persons with autism are at significant risk of developing mental health problems.  They feel they neither understand nor fit into the world, and experience feelings of loss and depression.

Despite all this, or perhaps because of it, autistic persons have great empathy for others, and wonderful senses of humour.  They like people to realize that they are unique, and have varying capabilities.  While their development is affected by their disorders, they are not necessarily intellectually handicapped.  Some who have no speech can express mature and insightful thoughts when given the chance to communicate in other ways.  Some people with ASD are highly intelligent and some have remarkable abilities in special fields including music, arts, numbers, and spatial reasoning.  But these special abilities are at odds with their lack of practical and social skills.

And how do the families of persons with autism fare?  Psychologists have determined that living with an impaired sibling need not be harmful.  While the experience may cause various stresses in terms of embarrassment, increased chores and less parental availability, it also nurtures the positive effects of tolerance, supportiveness, and greater maturity.

Although the genetic risk is low, shyness, attention deficit disorder and Asperger Syndrome is high in families with autism.  Intolerance to gluten, sugar, and dairy products is prevalent in these families as is “geek syndrome” – a familial tendency for excellence in mathematics, music and architecture.

Investigations into genetic, environmental and biomedical factors have yet to determine cause or cure for autism.  Researchers have recently found evidence pointing to chronic brain inflammation caused by immune system activity, beginning perhaps in the womb, and continuing throughout the life of a person with autism.

Studies have shown metabolic disorders, food sensitivities, and abnormal levels of minerals or metals in people who have ASD.  Any of these can be achieved through regulated diet, nutrition and supplements, and involves patient trial and error.

By understanding the nature of autism, we can better appreciate how these individuals must deal with a confusing world.  This enables us to help them cope with unpleasant stimuli and situations.  Moreover, we begin to recognize the frustration and hidden intelligence of all the voiceless, and develop increased compassion for the rest of our human family.

Being with persons who have vulnerabilities helps keep us grounded, in touch with our frailties, and increasingly sensitive to the presence of God in all of creation. 

Gloria Pearson-Vasey has a Master of Divinity degree and a background in nursing, music, journalism, and pastoral ministry.  She is a wife, mother and grandmother as wee as a Secular Franciscan.  She was works volunteers with individuals who have autism and is an advocate for people with disabilities.