By Michael Rock:
Despite the current scientific breakthroughs in our efforts to better understand intellectual and developmental disabilities, there is more room for improvement in how we statistically represent them.
For instance, people who have autism and comorbid intellectual disabilities are often excluded from studies about the condition, even though they represent about half of the autism community. Similar problems arise for those with autism who are minimally verbal, regardless of intellectual ability. By omitting these demographics, researchers fail to capture the full spectrum of ways autism manifests, weakening their thoroughness as a result.
There are numerous ways in which we can better strive to create more accurate demographic profiles of people with intellectual and developmental disabilities for research purposes. Some suggestions include greater consistency and standardization of how such conditions are defined, greater collaboration between federal agencies, as well as with private institutions, more advanced data analysis that can include more analysts who can combine data across agencies and allow for more complex data sets, as well as diverse representation along racial and ethnic lines.
As we become more knowledgeable about intellectual and developmental disabilities, the only way to effectively make sense of our knowledge and improve further is by making our data as accurate as possible.
Michael Rock is a New York City-based reporter and self-advocate with autism. A graduate of Brandeis University, his work has appeared in Kings County Politics, Chelsea Now, Our Town, Queens County Politics, and WhoWhatWhy.