Most people are familiar with the idea of a spectrum. “Autism Spectrum Disorder” is the way we think about autism and the way we speak about Autism. However, it is nearly impossible to chart where an indivdual falls on the autism spectrum. After speaking with doctors, epidemiologists, self-advocates, and anthropologists, Eveleth learned that the more we try to pin down what the autism spectrum really looks like, the less clear it will seem.
When you’ve met one person with Autism, you’ve met one person with Autism.No two individuals with Autism are alike. With changes in behavior and individual needs, there is no way to plot each individual condition on a line.
Stephen Edelson, the director the Autism Research Institute speaks on this: “With the spectrum, there’s a wide range, we’re still trying to figure out what that wide range means…I don’t have an answer. Scientific understanding of autism certainly continues to evolve.”
“I think there’s no one continuum necessarily,” says Lisa Gilotty, the autism-spectrum-disorders program chief at the National Institute of Mental Health. “It’s hard because…different people will break that up in very different ways, I’m not sure any of those ways are accurate.”
Because the spectrum has no established poles or ways of measuring, there is little data about how autistic people might be distributed along the spectrum. Different studies measure different aspects from intellectual disability, and verbal ability, and self-injurious behavior, but researchers know very little about what the autism population looks like as a whole.
Many research efforts focus on autism: the causes of the disorder, trying to identify genetic markers, and attempting to understand potential environmental contributors. Little of the funding goes towards figuring out what the spectrum looks like, or how to measure autism. Though experts might have said the spectrum went from “high functioning” to low functioning,” but those terms were never clearly defined. “We just don’t have good ways of measuring functioning-levels overall,” Anne Roux, a researcher at Drexel’s Autism Institute told Eveleth in an email. “For example, we know that 60-70% of people with autism have co-occurring health and mental-health diagnoses. Yet, there are really no measures that account for the role of co-occurring disorders in how people function.”
Part of why it is difficult to measure changes in intellectual disability is due to changes in how autism is diagnosed and classified. The 2013 Diagnostic and Statistical Manual of Mental Disorders (DSM) eliminated Asperger’s syndrome, a condition often seen as existing just outside of the autism spectrum. People who used to be diagnosed with Asperger’s have similar behaviors as autistic people- such as difficulties with social interaction and repetitive behaviors- but far fewer problems with verbal language. Now that Asperger’s syndrome is no longer a diagnosis, some of those people fell into an autism diagnosis, while some were no longer considered disabled.
Data from the Center of Disease Control and Prevention (CDC) is challenging to use as a baseline. The data tracks intellectual impairment, the IQ scores of 8-year olds, from 2010. The CDC cautions that the data shouldn’t be used to talk about all people with autism, as data represents a small portion of the population at a very specific period in time.
There are constant efforts in autism research, and the difficulties presented in surrounding discourse speak to a need to evaluate language and the way we speak about autism. Though “Autism Spectrum Disorder” is how we usually think about this condition, the future may present changes in how we think and speak about autism.