The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
As autism diagnoses become increasingly common, health officials have wondered how many U.S. kids have relatively mild symptoms and how many have more serious symptoms, such as very low IQ and inability to speak.
A first-of-its-kind study released Wednesday shows the rate of such “profound” autism is rising, though far slower than milder autism cases.
“It’s very important to know how many people have profound autism so that we can properly prepare for their needs,” including more health and education services, said Alison Singer, executive director of the advocacy and research group Autism Science Foundation.
Abstract
Objectives:
Autism spectrum disorder (autism) is a heterogeneous condition that poses challenges in describing the needs of individuals with autism and making prognoses about future outcomes. We applied a newly proposed definition of profound autism to surveillance data to estimate the percentage of children with autism who have profound autism and describe their sociodemographic and clinical characteristics.
Methods:
We analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network for 20 135 children aged 8 years with autism during 2000-2016. Children were classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50.
Results:
The percentage of 8-year-old children with profound autism among those with autism was 26.7%. Compared with children with non–profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight; have self-injurious behaviors; have seizure disorders; and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1000 8-year-olds. The prevalence ratio (PR) of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander (PR = 1.55; 95 CI, 1.38-1.73), non-Hispanic Black (PR = 1.76; 95% CI, 1.67-1.86), and Hispanic (PR = 1.50; 95% CI, 0.88-1.26) children than among non-Hispanic White children.
Conclusions:
As the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.
From the article:
Among the 20 135 children aged 8 years with autism in the 2000-2016 surveillance years, approximately 27% overall met the case definition of profound autism. In 2016, the most recent surveillance year, the prevalence of profound autism was 1 in 218 children aged 8 years. To our knowledge, this study is the first US population-based study quantifying the prevalence and describing the characteristics of the population with profound autism. This analysis used data from a long-running surveillance system for autism in the United States, allowing profound autism to be quantified in a well-described cohort of school-aged children. It is important to identify these children because they are underrepresented in autism research and intervention studies and generally have the greatest need for services and supports. Children with profound autism may have considerable medical complexity and likely may not be able to live independently or perform tasks of daily living as they age.15,16 It is essential that policies, programs, and resources are tailored to the profound autism population across the life span to ensure their needs are met.
While the prevalence of both profound and non–profound autism increased over time (2000-2016), the increase was greater for non–profound autism (from 1 in 254 to 1 in 70 children aged 8 years) than for profound autism (from 1 in 373 to 1 in 218 children aged 8 years); while attenuated, this trend remained when we used the 2002 study year as the starting reference point. This finding suggests that the composition of the identified autism population changed as the overall identified autism prevalence increased.
