The Autistic Spectrum - It’s Spiky, Not Linear

 

When you think of a spectrum, do you visualize a linear gradient from 0-10, or from white to black, or from low to high ‘functioning?’ People are not generally brilliant at everything or nothing, and that’s especially true for Autistic people. It seems like people are expected to be at least 'average' at 'most things,' especially in school. I felt bad about struggling in math and physical education until I learned that dyscalculia and dyspraxia are common in Autistic people. I excelled in English, French and Art classes, but that never felt to me like it made up for my struggles, until I learned (in adulthood) about this uneven distribution of abilities and began to understand the 'spiky profile' of Autistic abilities and struggles.

Many artists, authors, scientists, engineers, doctors, and inventors over the years were likely Autistic (never diagnosed), based on descriptions of their ‘quirkiness’ and their hyper-focus on their passions or intense interests.

I like to visualize the Autistic spectrum as a circle or sphere, with coloured spikes where each coloured spike represents a trait, ability, or struggle. We are often really, really good at some things and really, really struggle with other things.

Autism Spectrum - It's spiky

Support Needs

Instead of the terms ‘low-functioning/high-functioning’, many of us prefer ‘more support needed/less support needed’ and in which specific area. We refer to this as having a ‘spiky’ rather than a rounded profile.  

Here’s an example of my spiky profile, with no support needed in communication and intellectual skills, but help in understanding the perception of other people’s intent, such as sarcasm, teasing, bullying, and abuse. Because my partner, friends, and many colleagues are also Autistic, I'm at ease around the folks who surround me.

Source: Embrace Autism - The Aspie Quiz

A non-linear spectrum recognizes that we can perform well in some areas (like math or reading), while at the same time struggling with things like executive functioning, decision-making, interpreting sarcasm, or planning a grocery list and meal.

It also recognizes that we gain skills over our lifetimes that allow us to function at capacity, while there are times during our lives when we need more support and even lose skills when we are overwhelmed. For example as children, during times of change in school, when hormones change our bodies, and when age or stress drains our energy and makes us less able to keep up the behind-the-scenes coping strategies that we used to cover/hide/mask our differences.

We are less likely to be 'average' at everything, and more likely to be really really good at some things, with surprising struggles in other areas. Not all Autistic people are savants like Rain Man. Some Autistic friends have perfect pitch in music, or the ability to rotate and visualize objects in 3D from all angles in their mind. Some just have an intense interest in fashion, makeup, music or horticulture. Some successful Autistic professionals need help with mundane things like scheduling, emails and phone calls due to executive dysfunction, or social anxiety. Some Autistics have an intellectual disability. Some are physically disabled. Some are non-speaking. Non-speaking Autistics aren't non-verbal - they often understand everything being said about them and around them but have trouble coordinating their movements to produce spoken words. It's important to presume competence and offer different ways of communicating: sign language, iPads with apps, letterboards, keyboards, pictograms and observe non-verbal signs of interest or frustration. Many of us also have Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Just Google the EDS trifecta.

Abilities

This term 'superpower' is pretty cringe if it's used to indicate that someone is only useful if working (F-capitalism) or 'inspiring' because of their disability - yuck (Dis@bilityP0rn). Not everyone loves the terms superpower/kryptonite, but I do appreciate knowing that some of the things I feel confident doing and derive joy from stem from being Autistic.

One of the differences I love is my ability to hyper-focus on learning something new, and my ability to approach problem-solving by suggesting solutions others may not have thought of - by seeing parallels and patterns in seemingly unrelated ways. Sometimes I don't have the technical vocabulary to describe it but I can draw a picture to illustrate the pattern or similarity that jumped out at me.

Some have described my hyper-focus to me as a deficit, suggesting that I'm not a big-picture person, that I lose the forest for the trees and get lost in the details. However, I see this trait overall as a positive, because I see details and differences easily and quickly that others would miss, like spelling and grammar, and scratches and changes in data patterns. It helps me learn languages and draw or paint what I see.

Sometimes missing the forest for the trees or the tiny details in nature lends itself to creativity. For example, I love macro-photography and examining the underside of mushrooms on a hike. It gives a perspective others may have missed and might appreciate. It's also called bottom-up processing or learning. Learning by examples.

macro view underside mushrooms in Kananaskis by moi

Struggles

Part of my Autistic presentation includes a learning disability, dyscalculia. That means my working memory with numbers is super short. So I struggle with basic facts, adding in my head, map directions. I have to write everything down, and I can't visualize dates without a calendar.

To take a written date from a page and type it in the computer;

1) I say it out loud so the sound is what I remember, then

2) from the sound memory I write it somewhere else like on the computer.

I often mix up the numbers the way someone with dyslexia would mix up letters and need to be called back from the alternate universe I go to some times where numbers swim in a meaningless sea of randomness:

1093873473584754905872430958274592834759385714395873485767352376527828598379428572489562485726345984564635...

My punishment for being ‘deficient’ and just ‘not trying hard enough’ in math was to spend hours every day after school, attempting to do rote memorization of basic facts with flashcards or the first electronic educational toy "Little Professor":

I was told to just try harder (but I was trying my hardest). It's like asking a short person to try harder to reach the glasses on the top shelf in the kitchen without using a ladder. That's conformity and ableism, when we assume everyone is just like us (normal, conforming to the norms, unassisted). 

Accommodations for equity

Today, just as we would offer a step stool or chair to a short person to reach the top shelf, we offer assistive technologies like AAC (Augmentative and Alternative Communication) to help with speech, a calculator to assist with dyscalculia, insulin to help with diabetes, or a wheelchair to help with painful or weak muscles.

Equality is when everyone is treated the same, and expected to act or produce work identical to that of another person without taking into account disabilities and support needs. 

Equity is providing the needed support to allow each unique individual to reach their potential.

image source:  https://www.equitytool.org/equity/ 

Prior to my diagnosis, I struggled with unspoken expectations from family, friends, colleagues and customers. Autistic people are known for a strong interest in social justice, bluntly addressing the elephant in the room, and expecting things to be spelled out clearly and directly. This can lead to strained relationships when others benefit from a system, policy or habit that disadvantages people who dare to address inequalities, injustices and instead of pretending everything is wonderful when it really isn't.

I learned to communicate with tact and diplomacy after a lifetime of teaching, customer service, retail sales. I do laugh and love it when my Autistic friends are blunt though!  I learned to minimize my needs and make everyone else comfortable through growing up in a traditional, conservative household and community. I believed doctors knew best and that my medical complaints were minor through having them minimized and dismissed repeatedly over decades. Then one day I just could't do that anymore. I refused to continue to live under a rock or continue being a doormat. I just stopped doing it. Those who benefitted most from it took offence and we are no longer in contact. You have to stop doing what isn't working to create space in your life for new and good things to come in. That is exactly what has happened. It wasn't easy but it was worth it..

I'm glad to have access to the wealth of information online (better late than never) that has helped me realize I'm not alone. There's a wonderful community of people like me and we can find each other online and in person. Through trauma therapy for CPTSD, I'm learning that my needs matter. I speak up with confidence. I understand myself and others better. I'm not a drama queen, a people-pleaser or a door mat (anymore). And I sometimes bring in recent printed medical journal articles to educate my medical team on issues I'm dealing with and advocate for a referral to a specialist. I think this is easier to do when you are a little older and nearing retirement. It would have been much harder in my '20s and '30s because my finances and housing were so precarious and so dependent on the stability of my employment that I didn't dare speak up or out.

Time does not heal all wounds. Ignoring problems don't make them go away unless you're willing to pretend and play that game. Doing the work on myself, healing, growing, learning, therapy, curiosity and lifelong learning went a long way to understanding that it's okay to step out of the status quo when it's no longer serving me. It's even better to build a new set of rules of engagement that include authentic curiosity, consent, collaboration, community and care.

~Michelle

PS:  An older version of this updated article was originally written and published in Autism Around Alberta newsletter by Autism Society Alberta here:  https://mailchi.mp/autismalberta/feb2024aaa?e=8091b2c923#mctoc4