The challenge of diagnosing autism

What does 1 in 150 really mean?

By Kate A. Griffith

Have you seen any of the recent public service announcements sponsored by Autism Speaks? One shows a mother buckling her daughter into a car seat. The narrator says, “The odds of a child being involved in a fatal car accident? One in 23,000. The odds of a child being diagnosed with autism? One in 150. You know the odds of autism, now learn the signs.”

The diagnostic numbers seem to be all over the place. Obviously, Autism Speaks is hanging its hat on 1 in 150. Others cite 1 in 166. Some parents’ groups claim the number is as low as 1 in 60, or even 1 in 50. The most conservative number is much, much lower – 1 in 500.

What do the statistics really mean?
Dr. Rick Dowell of Evangelical Hospital’s Neuropsychology Services is in the unique position of having one foot in the world of neurology and the other in the world of psychology. As a neuropsychologist, Dr. Dowell is qualified to observe and diagnose children from a dual-science perspective that is perfectly suited to autism - a disorder that is a neurological (brain function) problem that presents itself in a child’s pattern of behaviors (psychology).

Pinning down the frequency with which autism occurs is inherently problematic, but the most widely accepted number is touted by Autism Speaks – 1 in 150. That number, according to Dowell, summarizes the results of much research, and it’s the number that the government goes by.

Dowell explains that the problem with placing a statistic on the incidence of autism is two-fold.

“In essence, there’s not a single disorder called autism, but a range of symptoms referred to as autism or autism spectrum disorder.” Dowell uses the example of strep throat. “If you do a strep throat culture and show it to 100 doctors, all 100 will agree that it is, indeed, strep throat. A strep diagnosis is clearly defined. Such is not the case with autism; the evidence isn’t cut and dry. Autism is a spectrum of symptoms that tend to occur together – that can be a pretty big umbrella,” Dowell says.

Under the umbrella, statistics tend to include not only children diagnosed with pure autism, but also children who are diagnosed with Asperger’s Syndrome and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS).

“Autism typically implies that the child’s verbal abilities are less well developed than their perceptual-motor abilities,” Dowell explains. “Asperger’s implies that the verbal skills are better developed than the perceptual motor, and the PDD-NOS diagnosis is used when the child doesn’t fit the classification of either autism or Asperger’s.”

To further add to the confusion, Dowell explains that none of the three classifications have a single cause. “For some children, the condition may be related to a genetic disorder, a metabolism error or significant premature birth. For others, the cause is exposure to toxins. Each cause can result in a different manifestation of symptoms,” he says.

The second problem with the statistics is that professionals can’t agree on the criteria for diagnosing a child with autism, Asperger’s or PDD-NOS. The disagreements vary from the ultra-conservatives, who may set the bar so high that children with a true disorder are missed, to those who diagnose very liberally, creating high number of false alarms.

Know the signs
There are many things to keep in mind when you consider the signs of autism, Dowell says. First and foremost, parents need to remember that the symptoms vary as a function of age. What’s typical in a one-year-old may be abnormal in a four-year-old. It’s also important to remember that a child who exhibits an odd behavior here or there doesn’t necessarily have autism. According to Dowell, the following are some of the core characteristics of autism:

• From 6-12 months of life, early signs of an autism spectrum disorder may include poor eye contact during parent-child interactions, an absence of cooing/babbling, an absence of reciprocal smiling and apparent indifference to others that may include tactile sensory features ranging from recoiling from touch to requirements for swaddling/holding close.

• During the 12 – 24 month age range, potential symptoms include persistence of the earlier signs along with very limited or no attempts to speak. Any communication may be gestural and play limited. Repetitive body movements (ie., hand or finger flapping, rocking, etc.), fixation on objects (ie., moving fans, prisms, balls, etc.), resistance to change and a tendency for the child to become overwhelmed in high stimulation settings may be observed.

• At age 2 and beyond, emerging features of a potential autism spectrum disorder include (in addition to persistence of other symptoms noted previously) a lack of initiation to engage in reciprocal play with peers, limited play, emergence of over-select behaviors (ie., lines up objects, requirements for sameness, etc.) and difficulties following the gaze of others. In addition, emergence of exaggerated fear responses ranging from extreme rage to total indifference (ie, to pain) is often observed.

Once the signs are observed, Dowell says it’s important to have an evaluation and, if your child is diagnosed, get the treatments and therapies that may help. With the wide variety of symptoms and severity on the autism spectrum, families should understand that all therapies are not appropriate or effective for all children. Some children with autism will benefit greatly from speech therapy, while others will benefit more from occupational or sensory integration therapy. Dowell believes the same to be true of a supplement program – there is no silver bullet that will “cure” autism. “If I were a parent of a child with autism, I assume I would try supplements and cleansing, particularly if I knew my child had some gastro-intestinal problems, as many children with autism spectrum disorder do.”

“It is so important for mothers and caregivers to trust their instincts,” Dowell says. “We see a child in the office and I interview the parents. Usually mom tells me what is going on. After five hours of testing, I end up telling mom exactly what she told me. If a mom says there’s something wrong, I figure there’s something wrong and I’m going to work to understand it. Mom is the best observer.”

Dowell says it’s important for parents to use that same intuition in choosing how to meet their children’s needs. “Once you begin to understand what’s going on with your child, you get to watch and figure out where things are going wrong,” Dowell says. “Ask yourself, ‘How does this look different than times when he is not distressed?’ ‘How do we use that information to minimize the bad days?’ It’s important to use that feedback to make your decisions.”

The most important advice Dowell believes he can give to parents once their child has been diagnosed with autism is to remember that autism isn’t a thing, it’s a journey. “The task is not to judge the journey – this is good or bad – but to find your way,” Dowell says. He uses the story of the Wizard of Oz as an analogy. “When your world gets turned upside down, you start a process of learning. Your sense of empathy deepens and you learn things. The process is important. You have to battle and learn. I think sometimes people want to find the destination; they want to find Kansas in their hearts, and they may, but it’s fleeting. Soon you’ll be back on the journey again.”