Robert Naseef, Ph.D.

"Every time I think I have accepted my child’s disability, something happens that sets me way back. We’re enjoying him and celebrating his accomplishments, and then he has a bad day with kicking and screaming, and I just freak out. I feel traumatized, but I don’t know whether I should compare myself to people who have been abused. I need help." These words from the mother of an 8 year old son with an autistic spectrum disorder echo the sentiments of many other parents who have children with very challenging conditions such as cerebral palsy, Down syndrome, epilepsy, and other chronic medical conditions. Let’s take a look at the emotional impact of child’s disability, in general and autism in particular, upon the family.

Autism is a devastating, developmental disability that usually appears between 15 and 20 months of age. Although people with autism do not all present exactly the same symptoms and deficits, they tend to share typically devastating social, communication, motor, and sensory problems that frequently create distressing behaviors. First, there must be impaired social interaction, which includes reduced eye contact, failure to develop peer relationships, absence of spontaneous joy or interest, and lack of social or emotional reciprocity. Second, there must be present impaired communication involving delay in or failure to develop spoken language; impaired ability to have a conversation; stereotyped, repetitive, idiosyncratic language; and lack of symbolic play. The final criterion is stereotypic and repetitive behaviors, including preoccupation, inflexibility and rigidity, motor mannerisms such as hand flapping and spinning, and preoccupations with parts of objects (Diagnostic and Statistical Manual of the American Psychiatric Association [DSM IV]).

There is a broad spectrum of these behavioral manifestations upon which the diagnosis of autism is made. And there are related and heterogeneous abnormalities responsible for the complexity in the way this disorder presents itself. Understanding the individual profile of the child is crucial in developing the most efficacious treatment plan (Greenspan and Weider, 1999).

In the last decade there has been an explosion in the number of new cases of autism-related disorders. The Autism Society of America estimates between 500,000 and 1.5 million people in the United States alone have a disorder on the autism spectrum, with an estimated 75% of these between the ages of 3 to 13 years. Whereas the incidence was 5 in 10,000 for many years, now some studies are pointing to 1 in 149 births (CDC, 2000); researchers and families are struggling to discern if this is truly an epidemic or due to better diagnosis.

A recent study reported by the American Medical Association (JAMA 2003) revealed the prevalence of autism among children aged 3 to 10 years in the 5 counties of metropolitan Atlanta, Georgia, in 1996. Cases were identified through screening and abstracting records from multiple medical and educational sources, with case status determined by expert review. A total of 987 children displayed behaviors consistent with autistic disorder, pervasive developmental disorder–not otherwise specified, or Asperger’s syndrome. The prevalence for autism was 3.4 per 1000. Overall, the prevalence was comparable for black and white children, and 68 percent of children with IQ or developmental test results (N = 880) had cognitive impairment. The rate of autism found in this study was higher than the rates reported during the 1980s and early 1990s, but it was consistent with those of more recent studies, such as the M.I.N.D. Institute Study from the UC Davis Health System in California. That study reported a 273% increase in autism cases between 1987 and 1998.

While some of the increase can be explained by widened definitions of the disorder, researchers in the Atlanta study said that the explanation for the rest of the increase is unknown. Regardless of the correct answer, the growing incidence is real; too many families watch in horror as their (in many cases) once healthy child "disappears" into the world of autism.

Trauma is generally considered to be an emotional shock that can cause lasting and substantial damage to a person’s psychological development. According to the American Psychiatric Association (2000), trauma is the personal experience of an event that involves threat to one’s physical integrity. Trauma can also be caused by witnessing such an event, or by learning about such an event that has happened to a family member or close associate. Although traumatic stress related to autism and other developmental disabilities has not yet appeared in the literature, I believe that this concept can provide a lens for seeing the effects upon families. Since there are many variables involved in how a family is affected, this model may apply to some families and not others.

As a psychologist, I help families deal with the often treacherous emotional landscape once autism strikes. It’s been called the "autism bomb." People often spontaneously describe to me how the diagnosis of their child’s autism was a bomb that exploded their hopes and dreams. The calendar of their lives was ripped off the wall and replaced by an uncertain future as they began intensive intervention to help their child, while they struggle to find hope and to regain their footing in life. In the words of two prominent child psychiatrists, "The birth of a severely developmentally delayed or handicapped baby is a trauma that virtually stops time in its tracks. . . . Suddenly your future is unpredictable and emotionally unimaginable. At the same moment, your past, full of hopes and fantasies of pregnancy, is obliterated and becomes too painful to remember. Parents are held prisoner in an enduring present" (Stern and Bruschweiler-Stern, 1998).

Traumatic stress is an overwhelming experience that affects mind and body and impacts people’s ability to think and make sense out of current experiences (van der Kolk, et al., 1996). These experiences often overwhelm at least temporarily and often chronically people’s capacity to cope. The trauma of autism can be severe because it is chronic and affects the family over the entire lifespan of the child. Just as the child/family overcomes one crisis, another crisis takes its place, intensifying as the child grows older and compounding the ongoing trauma.

Behaviors of children with autism frequently add to the trauma the family experiences. Many autistic children will cry and tantrum incessantly, break things, injure themselves, and shriek at high pitches, in many cases because they cannot communicate or because of the pain caused by their environment. Some children present with dangerous behaviors, such as running out of the house into traffic, into pools or lakes, or even up high-tension towers. They may break windows or dart into a neighbor’s house to search for items they are obsessed with, such as video players, remote controls, and TV sets. Just to ensure that the child will not escape, many families have to bar themselves under lock and key in their own home, putting the whole family at risk in the case of a fire.

One of the most draining problems families deal with is hyperactivity and the lack of sleep a child with autism may experience. After only two hours’ sleep, such children may still be up and on the move the next day. When it comes to sleep problems, people with autism may be among the most seriously affected, and research suggests that most individuals with autism experience sleep difficulties at some point in their lives (Durand, 1998). For weary parents, this lack of sleep puts them at high risk for depression, or for an anxiety disorder similar in presentation to post-traumatic stress disorder (PTSD).

Parents must stay vigilant because the crisis may never end. The constant and evolving struggles of the family with sleep problems, unusual behaviors, and communication can trigger the characteristic symptoms of PTSD. This reaction to trauma includes fear, hopelessness, and horror. There is also persistent reexperiencing of the traumatic event, be it the diagnosis or the emotions evoked by a particular crisis. There may also be a tendency to avoid circumstances reminiscent of the original trauma and even numbness in terms of general responsiveness. The trauma may also cause increased arousal, which results in parents being irritable and on edge indefinitely. These symptoms may cause clinically significant problems in daily social and occupational functioning. Families are often preoccupied wondering if their children are indeed happy, if they care about or love their families, and, always, if "we are doing the right thing."

Yet another cause of stress and trauma to the family is the lack of general awareness about the disorder on the part of the general public. The child with autism has no physical characteristics to indicate that there is a disability. When the family attempts to go out in public, the other members may be embarrassed if the autistic child enacts bizarre behaviors. Many uninformed people tend to blame the child’s parents for these unusual behaviors. Feeling judged and rejected in this way may cause the parents to isolate themselves (Miller and Sammons, 1999).

Recently, the mother of an 11- year- old with Asperger’s syndrome told me:

Traumatic stress is present when an individual experiences a stressor that is associated with the threat of serious harm or death or with feelings of intense fear or helplessness. It is a normal and natural response to an abnormal event. As we have illustrated, families of children with autism may experience this response repeatedly through the life cycle of their child. They are often confused by the symptoms of trauma and may fear "going crazy." Likewise, their extended families, friends, and colleagues are equally confused and may withdraw in the face of anger, fear, and anxiety. Understanding and making sense out of their reactions, which affect every aspect of human functioning, are central to the recovery process (Herman, 1992).

The rising incidence of autism and the growing public awareness about the disorder have prompted an ever more audible demand for appropriate services, support, and research to mitigate the trauma and chronic stress that burden the families of children and adults with autism. "There is a strain on any marriage whenever a baby is sick. And we always have a sick baby," says Josh Greenfeld, the father of a child with autism (1970). Many families would quickly concur, but we also note that reactions to autism, and the condition itself, vary from person to person and family to family. When the child is making progress developmentally and behavioral problems are minimal, families most commonly retain a sense of hope and reassurance.

But a "bad day" is often lurking in the shadows. For example, if a child has a tantrum in the supermarket that disrupts the atmosphere and attracts attention, or if a child bolts across the street without looking, a parent or sibling may experience terror—terror that may trigger palpitations, shortness of breath, dizziness, and even flashbacks to life-threatening incidents. Family members may experience nightmares and disturbed sleep, as well as a sense of despair. They may spend long periods of time on edge and behave irritably with each other as a result. But families are resilient and with support and effective intervention, some sense of order and predictability is restored to the family members’ lives, and thus the overpowering sense of helplessness and powerlessness can be alleviated. Families go on to find meaning in their struggle and love for their child and life itself. Families of children with autism need the awareness and support of the rest of our society this April and beyond.

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, (DSM IV- TR) (4th ed.). Washington, DC: Author.

Durand, V.D. (1998). Sleep better: A guide to improving sleep for children with special needs. Baltimore: Paul Brookes Publishing.

Greenspan, S. and Weider, S. (1999). The child with special needs: Encouraging intellectual and emotional growth. Reading, MA: Addison Wesley

Herman, J. ( 1992) Trauma and recovery: The aftermath of violence—from domestic abuse to political terror. New York: Basic Books.

Miller, N. and Sammons, C. (1999). Everybody= s different: Understanding and changing cur reactions to disabilities. Baltimore: Paul Brookes Publishing.

Seligman, S. and Darling, R.B. (1997). Ordinary families, special children: A systems approach to childhood disability. New York: Guilford Press.

Siegel, B. (1996). The world of the autistic child: Understanding and treating autistic spectrum disorders. New York: Oxford University Press.

Stern, D.M. and Bruschweiler-Stern, N. (1998). The birth of a mother: How the motherhood experience changes you forever. New York: Basic Books.

Yeargin-Allsopp, M., MD, et al. Prevalence of Autism in a US Metropolitan Area. JAMA. 2003;289:49-55

Autism Society of America, 2002, President’s Testimony to Congress

Centers for Disease Control and Prevention (CDC), April 2000: Prevalence of Autism in Brick Township, New Jersey, 1998 Community Report

Copyright © 2003 Alternative Choices
Last modified: 03/25/09