DIAGNOSIS OF AUTISM: WHY THE DELAY?
Dr. Nasir Sulman
Department of Special Education
University of Karachi
Many parents are unsure how to respond when they learn their child has a disability. Whether the deficit is a mild articulation disorder or a diagnosis of autism, learning of child’s disability can initiate feelings of shock, anxiety, fear, and concern. When parents learn that their child has a disability, there are many different thoughts that may run through their mind: “Is my child normal?” “Will he/she be successful in school?” “Will other kids make fun of him/her?” “What will his/her future be?” For parents, this becomes a time to realize that their ideal, normal child is now different. Some parents may ask the question “Why me?” as well as feel guilt and depression. As these thoughts begin to develop, parents may also try to determine if the disability is short-term and “fixable” or whether the diagnosis is more severe, requiring lifestyle changes throughout the entire family. This is all done in an attempt to quickly comprehend information about the disability as well as try to find the best educational and life options for their child.
At a time of initial diagnosis of child’s disability, parents may find themselves wondering where to turn and who can help them. A medical doctor is often the professional who makes a disability diagnosis; however, other professionals, such as a psychologist or speech-language pathologist, may provide valuable information relating to child’s disability. A great place to start is to talk to those professionals, including doctors, therapists, counselors, school psychologists, and child’s teachers, so that everyone who has a hand in the child’s education has the best interest of the child first and foremost.
Scientific research as well as empirical data have clearly shown that an impairment detected and treated at an early stage has a much better prognosis; that is, Early Detection and Early Intervention will minimize and/or prevent the consequences of an impairment, ultimately preventing the impairment from becoming a disability. Early identification of infants at risk for developmental delay is of the utmost importance to initiate appropriate intervention. Although early detection can be a challenge, the primary care practitioner is in the ideal position to recognize and refer these children.
There are many reasons why the proper diagnosis of autism is delayed for so long after the child’s birth. Often, especially for first time parents, nothing is suspected at first, this is simply a beautiful child, perhaps quieter and less active than other babies, or perhaps more difficult. The children may show precocious talents for music or puzzles), confusing the parents’ judgment abilities. Also, the child with autism is not readily identifiable as handicapped by physical appearance.
Medically, the reasons are two fold. First, most medical doctors, i.e. pediatricians and neurologists, who see the child first when something is noticed by the parent as abnormal in their child’s behavior, know very little about autism and the treatment options available. Second, those that do follow a regimented diagnosis procedure, usually without the input from a clinical psychologist familiar with autism.
The following medical tests are recommended before a diagnosis of autism is reached: a complete family history; history of pregnancy and birth; child’s medical history; a detailed physical examination; a general, age appropriate medical and neuro-developmental examination; a laboratory work-up, including a chromosomal analysis, an MRI or CAT scan, a cerebral spinal fluid examination, an auditory brain stem response, an ophthalmological examination, a hearing test, a blood test (for phenylalanine, pyruvic acid, and evidence of herpes infection), and a 24-hour urine examination for a metabolic screen and for the level of uric acid and calcium (Caramagno, 1992).
Testing may take many months or years before parents learn their child has the disorder of autism. When and if they receive the proper diagnosis little advice is given as to treatment because as a medical doctor they can offer no medication that cures autism. The medical doctor may only be able to prescribe medications that prohibit bad behavior. Few medical doctors recommend a clinical psychologist familiar with autism that will in turn recommend behavioral intervention. Yet children who receive early intervention tend to have better communication skills and fewer out-of-control behaviors, and parents of these children often have a greater understanding and acceptance of their child’s disorder.
Another reason for improper or late diagnosis of autism is labeling. Autistic disorders according to the DSM-IV (APA, 1994) fall into the category of Pervasive Developmental Disorder (PDD) along with Rett’s Disorder, Asperger’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Classified. The last category is used to classify atypical cases of autism that do not meet all the previously discussed criteria for autism because of the late onset and atypical symptomology. This label is used extensively, seemingly to avoid the word “autism.” A number of psychologists and psychiatrists have been debating whether or not Pervasive Developmental Disorder is a useful term. Some say the term is “an inappropriate and uninformative term that does not take advantage of the hard-won public awareness of autism”.
Gillberg (1991) opposes the use of the term PDD on the grounds that those that are labeled PDD, rather than autistic, may be deprived of their lawful rights because few people are aware that PDD indicates a serious mental disorder as compared with the number who understands what autism implies. On the other hand, some professionals prefer to keep the term PDD, arguing that changing the term would involve considerable cost in terms of educating parents, service agencies, and other professionals. Unfortunately, the professional debate over various terms for this condition and their inconsistent use only adds to the confusion of parents already bewildered by the perplexing behaviors of their child.
There are many adverse implications of a late diagnosis of autism, which include:
1. Not providing a diagnosis for the autistic child makes the challenge of understanding the problem even more difficult and puzzling to the family. In view of the severe, and at times bizarre, characteristics of autistic children, if parents were to perceive the child’s behaviors as reflective of parental or family pathology, it may frighten and puzzle other family members.
2. Attributing the child’s pathology to parents and siblings might result in guilt-induction, with its attributes of shame, remorse, and self-hatred manifesting themselves in other family members. Delay in diagnosis, thus a delay in understanding the pathology could result in confusion, hostility, and avoidance of the autistic child by the other family members.
3. A late diagnosis would prevent a speedy access to the appropriate interventions. These interventions, i.e. early behavioral treatment, are far more effective when they begin early.
4. Preventing access to community resources such as rehabilitation services, therapeutic management, special education, summer camps, and other community facilities that provide services for autistic children and their families is another negative effect of a late or no diagnosis.
5. Another drawback appears to be the tendency of parents to adopt corrective strategies of their own to change their parenting styles. Parents may become extremely permissive towards their autistic child, unknowingly rewarding the child for the very behaviors they wish never existed.
6. Useful information on medications, ongoing etiological factors and treatment innovations concerning autism is not given due to the lack of proper diagnosis. Failing to identify the problem deprives the family of access to the resources they require to cope with the catastrophic effects of having an autistic child.
There is great diversity in opinion regarding the effects of diagnosis of autism on the family. Ideally, children with autism should be diagnosed and provided with extra support as early as possible. After an extensive literature review and study, Norton and Drew (1994) summarize by saying, “Very limited research exists on the effect of disabilities in general, with almost none in the field of autism. This strongly indicates the need for further systematic study on the effects of a diagnosis of autism on marital and family relations”.