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By Amanda Nicolson Adams, Ph.D., B.C.B.A.
The diagnosis of autism is over 200 times more prevalent today than it was ten years ago. Few diagnoses have affected so many children and families in recent decades. Major issues of importance include the struggle to develop effective screenings for diagnosis and implementing early interventions for treatment. It is sadly ironic that despite the recent attention surrounding autism, this growing childhood disorder is still terribly misunderstood.
Autism is the most severe diagnosis on a spectrum of disorders referred to as Autism Spectrum Disorders (ASDs). ASDs are best understood as a group of neurological disorders, which manifest in range from mild to very severe. The term "autism" sub-classifies a group of children who demonstrate impaired development in language/communication, social skills and have an excess of aberrant behaviors, such as tantrums and self-stimulatory behavior. It affects boys four times more than girls. The estimated prevalence in the United States (and other industrialized countries) is about 1 of every 150 births diagnosed somewhere on the spectrum. But, even conservative estimates place autism as more prevalent in pediatrics than cancer, diabetes, spina bifida, and Down syndrome combined.
Searching for the Cause
The most recent research links various genetic abnormalities to the occurrence of autism spectrum disorders. In fact, as many as 19 genes have been linked to autism, suggesting there may be a genetic component to the disorder. However, there has yet to be found a reliable, causal variable in common across cases, which means the scientific community is still looking for the cause or causes.
A very unfortunate turn of events in the 1970's labeled parents and especially mothers as a factor or cause of autism. This horrendous notion was put forward with no supporting evidence and has since been thoroughly rejected. The fact is that no evidence has ever substantiated any kind of environmental link–including any parental component of any kind. ASDs are no more preventable than a brain tumor would be. While parents cannot prevent autism, the good news is that they certainly can assist in early detection and effective treatment of the disorder.
The moment a parent or caregiver sees that a child is not talking or "seems different," a screening should be done. The Modified Checklist for Autism in Toddlers (M-CHAT) is a quick paper and pencil checklist that determines whether a child shows significant signs of autism. It can be used in children between 16 and 30 months of age. The M-CHAT is simple and can be scored in less than two minutes, although high false positive rates have been reported. A false positive result is not desirable, but it is preferable to missing the chance to make an appropriate diagnosis altogether. Another screening tool is the Childhood Autism Rating Scale (CARS). The CARS has a higher validity than the M-CHAT but requires a little more time to carefully score. Both tools are useful and quick. Some parents and caregivers fear that these screening tools may indicate a child has autism when he or she really doesn't. Screen anyway; treat anyway! The best treatment really amounts to a sequence of maximally effective teaching methods that could help any child, not just those with autism. While not being alarmist, the recommendation is to err on the side of caution.
Receiving the diagnosis of autism is, at best, a trying time for families. While diagnosis is becoming more consistent and available, finding qualified professionals with experience in autism is still a struggle for parents. Considering that autism was only termed in the 1960's, and that medical schools take time to revise curriculum, and that pediatric rotations seldom include training in autism, it is no wonder finding qualified expertise is difficult. It is still not uncommon for parents to see two or three different professionals and receive two or three differing opinions. While only licensed clinical psychologists and physicians can make official diagnoses, other professionals including some speech language pathologists (SLPs) and behavioral psychologists (board certified behavior analysts, BCBA), have a great deal of experience and training in autism and can assist with evaluations and screening tools that will aid in obtaining the proper diagnosis. Given that the best outcomes are associated with early diagnosis and treatment, it is imperative that suspicious behavior in young children be seriously evaluated.
Two aspects of autism make it difficult to diagnose and understand. First, it is a spectrum disorder and affects each person differently; second, it is a phenomenological diagnosis, meaning that no medical test will yield conclusive results. Only careful observation by a qualified and experienced professional can result in accurate diagnosis. Because there are no reliable biological markers, the potential range of disability makes it essential to individually assess each child. A diagnosis is, at least to some degree, subjective, even from experienced, qualified professionals.