When a parent or a professional describes an autistic person, they often use the words "mild" or "severe" autism. Sometimes I hear that the person is on the "high" or "low" end of the spectrum.
Let's try to extrapolate the autistic spectrum from these terms. It is a two-dimensional continuum, on one end of which is the "low end" and on the other is the "high end" of the spectrum. Each person is somewhere between the low and high points in terms of the severity of their autism. The closer the person is to the "low end" of the spectrum, the more "severe" their autism, and vice versa.
That is the traditional view. But if the entire spectrum exists on a single line between the two points, how can we explain the well-documented endless variation in autistic profiles? If we can adequately distinguish autistic individuals by describing their autism as "severe" or "mild," how come we also know that no two autistic individuals are the same?
The reality is much more complicated. Autism affects every domain of functioning, and it affects each domain differently in each person. And in each person, every autistic trait is expressed differently.
Imagine all these differences as facets of a lens through which various information gets transformed as the person takes it in. Some of the input gets in faster, some slower, some gets amplified, some gets muted, some gets distorted, and some might not even register. The response gets further transformed on the way out through the same lens with its multiple facets of autistic traits, abilities, and differences. The specifics can change moment to moment, day-to-day, and over the years.
I see the following implications of this view of the spectrum:
1) The same autistic person can be very high or even gifted on some traits, and low on others. There is no rhyme or reason. In my clinical experience, the domains are independent of each other. That is why you might have encountered both autistic people who are exceptionally emotionally attuned, insightful, and self-aware, and those who have alexithymia and cannot distinguish their emotions from bodily sensations. You might have met autistic people who are very socially motivated and also those who show little interest in others. You might have heard of professional autistic athletes, and also have met autistic people who are very clumsy and tend to bump into doors, walls, and others as they are trying to pass by.
No autistic person is 100% high or 100% low on all domains and traits. It is always a mixed bag. And it is this mix and its interaction with the environment that determine how the person functions in each moment. This brings us to the importance of accommodations and supports, which are adjustments to the environment and services aimed at supporting optimal functioning.
2) We cannot determine support needs based on a single factor, or in a simplistic way. We also cannot assume that support needs are consistent and uniform. Support has to be flexible and take into consideration each persons' strengths, challenges, and possible fluctuations in functioning. Autistic people categorized as needing minimal supports can have moments, hours, and days when they need more extensive supports. And vice versa, those categorized as having high support needs might manage very well in certain situations, in certain areas, or on certain days.
3) Autistic traits can represent strengths and positively affect functioning. Due to the specific combination of autistic traits, an autistic person can function more successfully than a neurotypical person in certain areas. I believe this is at the heart of seeing autistic people as possessing many strengths and abilities, some of them determined by their neurotype. It is also at the heart of how neurodiversity in our communities, and, more specifically, in workplaces, can be incredibly beneficial.
4) Certain autistic traits or well-developed domains of functioning can help compensate for or cover up some of the challenges. Compensation and cover-up can be effortful, exhausting, and even harmful. They can prevent a diagnosis and make supports unavailable, or less available. As professionals and clinicians, we need to explore beyond the obvious and ask about compensatory, or masking, strategies a person might use. We should also pay as much attention to what the person avoids doing as to what the person can do.
I was not able to fit everything into this image. For example, co-occurring medical and mental health conditions affect functioning. I included the domains based on my clinical experience. It is not an exhaustive presentation.
Also, the spectrum not being on one line is not my original idea. Many in the autistic community speak and write about this. I have seen the alternative depictions of the autism spectrum as a pie chart. I wanted to create an image that would be more consistent with clinical practice. We often use standardized assessments with scores distributed on a bell curve as well as qualitative instruments and clinical observations. The type of continuum for each domain that I suggest can reflect either quantitative or qualitative assessments.
Reference: For an example of an autistic person discussing this topic, please see The Neuroclastic blog by C.L. Lynch titled “Autism is a Spectrum” Doesn’t Mean What You Think."
I wanted to thank everyone from the autistic community who provided feedback on my thoughts. Additionally, thank you Ludmila Praslova, Ph.D., SHRM-SCP, for your feedback on this article.