Managing Expectations in Autism 

All over the world autism has become more prevalent in the last decade. In the United States one out of every 100 children is believed to have some form of autism. The term autism meaning living in self highlights the social deficits in autism – lack of desire and ability to make social relations, and lack or poor verbal and nonverbal skills to engage in social communication. A child with autism does not make eye contact, does not respond to his name, does not respond to mother’s overtures of love, does not share joy, and does not share interest in objects, things and activities with others. For example, when the parents point to show something, the child does not look at it, neither the child shows them anything of interest to him. A child with autism lacks play skills. He engages in repetitive behavior, likes routine and is distressed by change in his environment. Every child with autism has a different presentation resulting in various terms used to describe them. Mild autism is often called pervasive developmental disorder, while intelligent children who lack social skills and have odd language and behavior are said to have Asperger syndrome. 

So far the cause or causes of autism are largely unknown. It is believed that genetic factors make a child vulnerable to some unknown environmental toxin causing the syndrome of autism.  Although more and more genetic risk factors are being identified, the environmental risks are still elusive resulting in widespread speculation.

Autism in a child is very stressful for parents. The label conjures up visions of a child who may be dependent for life and may have a host of challenging medical and behavioral problems. Overwhelmed by the uncertainty surrounding all aspects of autism from diagnosis, causation to management and outcome and last but not the least by an abundance of conflicting opinions and options offered by lay and scientific press, they meander between hope and despair, recovery and regression and acceptance and rejection.

Balance is the key to managing expectations in this scenario. As soon as the diagnosis is suspected, the parents should try to get early intervention services for their child without losing heart if these services do not produce the results that they were hoping for. Even if they do not agree that their child has autism, a natural reaction of some parents, they should seek and continue early intervention while continuing the search for proper diagnosis. And if restoration and recovery is elusive they should accept their child with equanimity and continue to take care of the child dutifully without obsessing about the outcome, as the Hindu scripture Gita teaches. While we all seek miracles in despair, the parents should not become irrational to the point of risking the welfare of their child and their family by seeking potentially toxic and expensive treatments or neglecting the welfare of other children in the family.  Acceptance, selfless goal-directed diligence and patience are the keys to coping with this chronic condition.

Vidya Bhushan Gupta, MD, MPH, FAAP
Professor of Clinical Pediatrics
New York Medical College
Medical Director
Hudson Valley Developmental Disabilities Service Organization