What does it mean to be on the autism spectrum?
Perhaps you have heard this phrase for many years, and if you have been active in the disability community or otherwise involved in disability issues for a long time then you may know that “on the autism spectrum” has meant different things at different times, and even today means different things to different people.
Added to that, there is the word, “disorder” tagged on – “autism spectrum disorder.” This is problematic because many people don’t consider autism a disorder at all. My own exploration of neurodiversity (hyperlink to “What is neurodiversity?”) has led me to wonder: How broad is the spectrum? Who does it include? And why are people so hard pressed to agree on what it all means, anyway?
Definitions of Autism
A generally accepted definition or understanding is that autism is a neurodevelopmental condition that manifests differently in each person.
Even when people do agree that perhaps “disorder” is not the best language to use, there is a temptation, at least a clinical sense, to slot people and their diagnoses conveniently along some kind of line, given the understanding of a spectrum as something finite yet extreme, something having, for example, “opposite ends.”
Yet the original (and primary) meaning of “spectrum” refers to ‘a band of colors, as seen in a rainbow, produced by separation of the components of light by their different degrees of refraction according to wavelength.’ And don’t we talk, rather casually when it comes down to it, of people, “being on the same wavelength”? Doesn’t it make sense, therefore, that as autistic and other neurodivergent people work toward greater recognition and respect for their experiences, the world at large should embrace this “rainbow definition,” and rejoice in the many wavelengths of neurodiversity?
The Autism Spectrum is Not Linear
The spectrum is not linear, and “functioning” labels, like “high-functioning” and “low-functioning,” not only perpetuate this false implication but also reinforce ableist stereotypes about autistic and other neurodivergent people at any point on the spectrum, from folks who might seem to present as neurotypical to folks whose experiences may fit the description of “profound autism.”
I myself was surprised to learn that the term profound autism exists, if only for the reason that while researching it I could find almost no information directly documenting the experiences of the people supposedly in this category. Most of what I found was information from parents describing their children this way, or from autism researchers describing the people in their research. In truth this mirrors the way intellectually disabled people are often treated in the world at large, including being marginalized if not outright excluded by their differently disabled peers.
The Functioning Labels of the Spectrum
Functioning labels (or the terms that imply them) are similarly problematic. For example, the term Asperger’s syndrome refers to Johann Friedrich Karl “Hans” Asperger, an Austrian doctor who referred children he had diagnosed with “autistic psychopathy,” (later termed Asperger’s syndrome and considered clinically to be a “high-functioning” form of autism) to Am Spielgrund children’s clinic in Vienna, where nearly 5,000 disabled children were euthanized under Nazi German rule. The Nazi program of murdering disabled children by euthanasia was a precursor to the Nazi concentration camps.
In fact, the focus on autistic children throughout more recent history has tended to neglect, among other things, the very real truth that people grow up on the spectrum, and people on the spectrum grow up. As the paradigm of autism research continues to shift, the question becomes not how to help autistic people navigate their everyday lives amidst prevailing social norms, but rather how to meaningfully support autistic people in living happy and fulfilling lives in their own right.
Dismantling a linear notion of the autism spectrum, and challenging notions of autism as a disorder where people’s “cases” are expected to fit a linear understanding, are good first steps toward the ultimate goal of listening to autistic people so as to recognize, elevate, illuminate, and celebrate their experiences.
In dismantling the linear notion of the autism spectrum, we can shed light on the spectrum in all its varied wavelengths. We can learn to see the spectrum as a spectrum, or a spectrum of spectrum, in which every person on it is unique and every experience rendered invaluable. We can come to understand that being “on the spectrum” means so much more than what our language (and clinical definitions) might lead us to believe; and in time, we may even discover that the spectrum is nothing but a spectrum, and that there exists as much spectrum within the spectrum as spectrum without.
This understanding can open up a world of possibilities for all types of neurodiversity, allowing space for meaningful inclusion, appreciation, and celebration of the spectrum in its many forms.
Kari Turner is a freelance writer and disability advocate from Los Angeles. She and her husband are raising their family in California’s high desert. In her spare time, of which she’s had little since her daughters were born!, she blogs about disability, spirituality, parenting, and faith at http://writingthetao.blogspot.com. Follow her on Facebook and LinkedIn.