The Spectrum Is Not Linear
Talking about the words we use is a touchy subject these days.
It seems to polarize people. The mere suggestion of changing the words we use evokes vivid emotional phrases like, “social justice warriors” and, “victims of cancel culture.” While I’ve been known to get on a soap box to monologue and rant (thank you neurodivergence…), the point of this first post is not about being politically correct. The point is this:
We are talking about autism the wrong way and it is leading to a lot of confusion and missed opportunities.
Autistic people don’t fit neatly on a line. No one does.
Most people think and talk about the autism spectrum like it’s a line. I’ll be the first to put my hand up in shame and say that I used to talk about my Autistic clients this way — like they could be placed neatly on a linear spectrum of ability like this:
Who could blame us? It’s hard to think about it objectively when everyone is doing it. Even the health professionals. It just seemed like consensus. Heck, I’ve read diagnostic reports recently that use terms like “high functioning” and “Asperger’s”. It’s how Autistic people are portrayed everywhere. You see it in popular media, movies, and “feel good” news stories. You hear it in meetings with specialists and educators. You even read it when other families post about their children online:
“My son has trouble getting dressed 👕👎 but he’s otherwise high functioning 😂”
What’s the problem? Functioning labels are very misleading.
Autistic researcher Dr. Stephen Shore describes the problem with functioning labels clearly:
“It lumps together the common differences shared by Autistics, and ignores the constellation of characteristics that blend together to make a unique person with unique strengths and support needs.”
Many of you might feel this disconnect intuitively. Many of you experience it often — like the well-intentioned reassurances from teachers that you are “so lucky to have a high functioning kid” when in reality, your experience at home is much different. The gatekeeping of support services for “low functioning kids” by schools and summer camps. Funding sources being denied because functioning level is being determined by your ability to dress, not by the crushing anxiety, sensory pain, or executive dysfunction that is invisible to them.
Autistic people everywhere are being pigeon-holed into functioning levels that generalize their level of need, invalidate their adaptive strategies, and ignore their strengths.
Spikey Profiles are a more accurate way to think about the autism spectrum.
In this model, the spectrum looks like a range of domains. These domains can be broken down more, but we’ve kept them simple to illustrate our point.
Dots closer to the centre of the circle represent a domain or skill with more support needs, and dots closer to the edge of the circle represent an area that is more of a strength. It is a very holistic way of conceptualizing someone.
When you join all the dots, it creates a unique pattern for each individual that more accurately reflects their experience. The #ActuallyAutistic community calls them Spikey Profiles.
Spikey Profiles reveal areas in which an individual may need support, but more importantly, the areas of strength that may be overlooked by a placement based on a linear scale.
EXAMPLE 1 - KARL, 34 YEARS OLD
Karl is Autistic. He has a job as an executive at a tech startup. He’s whipsmart. Karl uses Slack and email at work and is direct and effective with electronic communication. His English is impeccable. He’s able to make quick, iterative, logic-based decisions. It’s a competitive advantage in his field. Karl tells me he works from home because the sounds and visuals of the office cause sensory overload. Karl needs an assistant to do his grocery shopping and cooking because he can suddenly lose his balance when he is standing. He also has a tendency to hyperfocus on work and will forget to eat and drink. Karl wears sandals and pants with elastic waistbands because he was never able to learn to tie a knot. He feels awkward at family dinners and staff parties. He almost always has a multi-day shutdown after social gatherings because of all the effort he puts into managing his stims. Karl feels like life should be easier for him because people always said he was “high functioning.”
» Because of his job and executive functioning strengths, most people would say Karl is Asperger’s or high functioning. But that might miss the fact that Karl needs many accommodations and supports to get through the day successfully.
EXAMPLE 2 - ELLA, 7 YEARS OLD
Ella is 7. She’s Autistic. She’s cute as a button, and knows everything there is to know about Apple products. She knows the release year of every product by memory. She tells me using augmentative communication on her iPad. Ella is always the first one at the door when it’s time for recess. She lines up her jacket, socks, and shoes, and puts them on by herself. On the playground, Ella loves to run and climb. She can get up things no other student can. But, in class, she can’t stay in her chair. Her body needs to move. So she paces and wiggles her hands by her eyes. Sometimes people bump into her accidentally. She screams. LOUD. Unexpected touch feels very painful for her. That’s why she “doesn’t play well with others.”
The EAs think they are working in the “low functioning” classroom, with the “non-verbal” kids. They often don’t bring out her iPad to help her communicate because “it’s too much work,” and they don’t think she understands. They say things like, “She’s just trying to get out of her work.” Ella understands everything they say.
» Because Ella is non-speaking and engages in “behaviours” to meet her sensory-related support needs, people call her low functioning. But that misses the fact that Ella has significant strengths in language and motor coordination, strengths she doesn’t get to show too often because the opportunities and accommodations aren’t provided. Instead, they presume she is not competent.
Functioning language limits participation.
Kids labelled as “high functioning” often don’t qualify for needed services because of their abilities in other areas — mental health supports being a common one. It’s often assumed they are “being lazy” or “just need to self-regulate” because they mask or can participate more easily in other situations. This is a form of gaslighting and shame that causes burnout and depression.
Kids labelled as ‘low functioning’ or ‘non-verbal’ are often presumed to understand nothing. We know this is false, and an incredibly dangerous misconception. It is also assumed that their skills won’t change over time. They are placed in “life skills programs” or “low functioning classrooms.” In these classrooms, they are denied the grade-level education that many of them would understand. They are often forced to repeat pre-school academics for treats and have support workers touching their bodies over and over and over again without their consent.
Here’s non-speaking author Ido Kedar summarizing it well in his book “Ido in Autismland”:
“I think labels like ‘high functioning’ and ‘low functioning’ and expecting us all to respond to the same treatment makes it a lot harder for people to understand how different we are.”
Functioning language is offensive.
If all that isn’t enough to change your mind, consider that functioning language is just downright offensive.
When we say someone is ‘high functioning’ or ‘low functioning’ what we are really communicating is how much their autism affects OUR lives. It is a label that is applied without any thought for how the Autistic individual experiences the world.
It’s hard to get out of a box once you’ve been put in one. This is why the Autistic Community is against suggesting there are subtypes of autism. We would be wise to listen.
EXAMPLE 3 - JOSHUA, 21 YEARS OLD
Joshua is 21. He lives in his parents basement. He doesn’t pay rent, and plays video games most days. He’s gone to a couple job interviews, but never followed up with the managers afterwards. He doesn’t cook or clean, because his mom is home to help with that. “He’s just finding his way,” she says. “He just hasn’t found something that interests him yet,” she explains. Joshua doesn’t play any sports and mostly socializes on Discord with his friends. When he does go out with friends, he usually gets drunk for some “social lubricant”. He’s shy. He’s a very good writer and his friends are encouraging him to become a blogger.
» Because Joshua is neurotypical, nobody describes him with a functioning level. That’s because describing someone with a functioning level is dehumanizing. Instead, they give him the benefit of the doubt and the time to find a career that is interest-led or based on his strengths. His social struggles aren’t pathologized, even though he is doing things electronically and using substances to support himself in social situations.
So what should we do instead?
We recommend talking about your Autistic clients, students, or family members in terms of their Strengths & Support Needs. Over time, create a Spikey Profile — do it with them if you can! Consider how programs and activities meet these needs and how willing they are to lean into the strengths.
