Assessing the Autism Treatment Evaluation Checklist

Recent research from Dr. Mark Geier and his son David Geier has evaluated two of the most commonly-referenced autism assessments, the Autism Treatment Evaluation Checklist (ATEC) and the Childhood Autism Rating Scale (CARS), to learn more about their potential similarities and differences. The ATEC assessment relies on information provided by parents, while the CARS, a well-established and widely-validated assessment, offers quantitative information provided by medical professionals. Because the CARS has already proven itself to be an effective and reliable method of diagnosing autism, the Geiers primarily set out to determine if the ATEC was equally reliable by comparing its results to those generated by the CARS.

To conduct an accurate evaluation, the Geiers sought 56 children with ASD to undergo two rounds of assessment; each participant would be assessed using both the parental ATEC method and the professional CARS method. Neither parents nor medical professionals would be made aware of the other’s scores, and for consistency, all of the children were evaluated by the same medical professional.

First, a little more about the CARS and ATEC assessments. The CARS is comprised of 15 different categories, to which professionals assign a score based on their observations of a child; total assessment scores can range between 15 and 60. Scores between 15 and 29.5 indicate that a child isn’t autistic, while scores between 37 and 60 indicate a child has moderate to severe autism. Any score in between reflects the presence of mild autism. While the CARS is intended to be conducted by doctors or psychologists on a single occasion, the ATEC is intended for parents, teachers, and others who’ve observed a child’s behavior over an extended period of time.

So what did the Geiers learn about the ATEC scores as they compared to the CARS scores?

The assessments conducted by parents using the ATEC method actually yielded scores that were significantly correlated to CARS scores. Scores in the Sensory/Cognitive Awareness domains and Speech/Language/Communication demonstrated a particularly high correlation, with correlations of .74 and .72, respectively. Overall, the ATEC assessment scores showed a .71 overall correlation to the CARS assessment scores.

These findings are significant not only because they help validate the reliability of the parental ATEC assessment, but because the ATEC is one of the few autism assessments that takes into account the health and physical symptoms of a child. Even the CARS assessment provides us with little insight as to an ASD individual’s physical symptoms, which explains why the correlation between the two assessments in the Health and Physical Behavior domain was so weak.  This means that going forward, parents can feel more assured in turning to the ATEC assessment to derive accurate information about their child’s symptoms, including those other assessments fail to adequately address.

 

The Geiers’ Push for Change: The Pertussis Story

Sometimes scientific evidence isn’t always taken as truth when first presented. We’ve seen examples of such many times throughout history; for example, it took years for the CDC’s 1964 warning that smoking causes lung cancer to be taken seriously. This same aversion to acknowledging health warnings was apparent in case against the pertussis vaccine, which for years was known to cause adverse effects in children and which could have easily been replaced by a safer alternative. Yet it took decades for the government and manufacturers to not just listen, but take action.

The Early Years

The story of the pertussis vaccine and the push for a safer alternative began in the early 1900s, when scientists first began exploring a vaccine that would prevent the spread of the highly endemic whooping cough (also known as pertussis), which killed thousands of individuals each year. The whooping cough is caused by a bacteria that infects a victim’s respiratory system, leading to frequent coughing, irritation and an increased risk for seizures, among other effects. Given the severity of the disease and its ability to easily spread among individuals, the development of a pertussis vaccine was both welcomed and necessary. Development of the vaccine continued throughout the first half of the 20th century.

The Evolution of a Vaccine

By the mid-1960s, children in most states across the United States began receiving the pertussis vaccine. This vaccine included an active, whole-cell strain of the toxin pertussis necessary for creating needed antibodies. This whole-cell version of the vaccine underwent numerous prior alterations before it was deemed acceptable, yet trials of the final whole-cell vaccine still yielded conflicting results regarding its effectiveness and safety.

The whole-cell version of the pertussis vaccine (DPT) also contained high levels of endotoxins, a fact that manufacturers chose not to make public.  In 1961 pertussis vaccine manufacturers were explicitly notified by the International Symposium on Pertussis that the current whole-cell vaccines were correlated to significant neurologic disorders in children who had received the vaccine.

As the Geiers have noted, every year since the 1950s, there have been reports published describing adverse effects like seizures and even sudden death among children who received the DPT vaccine. The scientific community and general public gave increasing attention to these findings throughout the 1970s and 1980s, and evidence continued to mount.

In 1979, the CDC even held meetings to determine if a relationship existed between sudden infant death syndrome and the DPT vaccine; shortly after, the DPT vaccine was recalled from a number of states, yet was reinstated immediately after the recall without a specific explanation.  The FDA went so far as to issue an apology to pharmaceutical companies for the recall.

All the while, an acellular version of the vaccine, which included a safer, inactive pertussis strain that would reduce the risk of adverse effects, was available for administration. Yet this safer acellular alternative was not produced by manufacturers, who believed the version to be too costly and difficult to market. Meanwhile, a number of countries outside of the United States were abandoning the whole-cell vaccine for safety reasons and instead using the acellular vaccine.

The Push for an Acellular Pertussis Vaccine

It was only until lawsuits were waged against pharmaceutical companies and those like Dr. Mark and David Geier lobbied for government action that changes began to occur. Mark and David Geier had conducted their own research on the adverse effects of the pertussis vaccine and also found a link between the vaccination and convulsions, fevers, and death among children who had received the vaccine. In addition to his research, Dr. Geier also testified in numerous court cases against pharmaceutical companies. Yet Geier and the petitioners he testified for faced a number of challenges from the Department of Health and Human Resources, as well as the professional opinions of researchers conveniently funded by pharmaceutical companies. Despite these obstacles, in 1992 the FDA officially approved an acellular version of the pertussis vaccine for children at 18 months and 5 years and the whole-cell DPT vaccine was removed from the U.S. market by 2001, though it’s still manufactured and sold to buyers overseas.

The Takeaway

As the story of the pertussis vaccine and the Geiers’ experience demonstrate, making a change for the better isn’t always as easy as proving the change is necessary. Often, when research yields evidence unfavorable to government and industry, it can take years, even decades, to shift perspectives and prompt a safer course of action.