“My son is on the severe end of the autism spectrum.”
“We’re all a little autistic– it’s a spectrum.”
“I’m not autistic but I’m definitely ‘on the spectrum.'”
If only people knew what a spectrum is… because they are talking about autism all wrong.
Let’s use the visible spectrum as an example.
As you can see, the various parts of the spectrum are noticeably different from each other. Blue looks very different from red, but they are both on the visible light spectrum.
Red is not “more blue” than blue is. Red is not “more spectrum” than blue is.
When people discuss colours, they don’t talk about how “far along” the spectrum a colour is. They don’t say “my walls are on the high end of the spectrum” or “I look best in colours that are on the low end of the spectrum.”
But when people talk about autism they talk as if it were a gradient, not a spectrum at all.
People think you can be “a little autistic” or “extremely autistic,” the way a paint colour could be a little red or extremely red.
In fact, one of the distinguishing features of autism is what the DSM-V calls an “uneven profile of abilities.” There’s a reason people like to say that “if you have met one person with autism, you’ve met one person with autism.” Every autistic person presents slightly differently.
That’s because autism isn’t one condition. It is a collection of related neurological conditions that are so intertwined and so impossible to pick apart that professionals have stopped trying.
The autism spectrum looks more like this:
All autistic people are affected in one way or another in most or all of these boxes – a rainbow of traits.
If you only check one or two boxes, then they don’t call it autism– they call it something else.
For example, if you ONLY struggle with communication, then they call that social communication disorder.
If you ONLY have problems with body movement/control then that is called dyspraxia or developmental coordination disorder.
If you ONLY have sensory processing issues then that is sensory processing disorder.
But if you have all of the above and more, they call it autism.
You can see how ridiculous it seems, therefore, when someone says “we’re all a little autistic” because they also hate fluorescent lights or because they also feel awkward in social situations. That’s like saying that you are dressed “a little rainbowy” when you are only wearing red.
Having sensory processing issues doesn’t make you “a little autistic.” It makes you someone with sensory processing problems. Autistic people will understand your struggles and welcome you as a fellow neurodivergent cousin, but that’s it.
But in order for a person to be considered autistic, they must have difficulty in multiple categories spanning the spectrum. Diagnosis depends on evidence that you do span the spectrum in observable ways.
Some commonalities are less obvious and are not required for diagnosis but are almost universally-reported by autistic people.
Each autistic person is affected strongly enough in one or more categories for it to be disabling in some way. But each person’s dominant colour palette may look different.
Here are some examples of how autism could manifest in three different people.
As you can see, all three of these hypothetical autistics show classic signs of autism, and yet they all seem very different from one another.
Which one is the “most” autistic?
Person One would probably be described as “aspie” or “high-functioning,” even though their monotropic mindset might cause executive function problems and make it hard to live and work independently.
Person Two is the type of person who is often described as “severely autistic” since they cannot speak and do not appear to understand what goes on around them. However, people like Carly Fleischmann and Ido Kedar have taught us that in fact they are very socially aware and understand pragmatic speech quite well.
Carly’s interview style in her Youtube show Speechless, for example, is extremely witty and flirtatious in a way that many an “aspie” would be unable to imitate.
If the only thing stopping this person from being witty, social, and vivacious is a motor-control problem, then are they truly “more” autistic than Person One?
Person Three might be able to be independent in adulthood if given the stimulation and accommodations they require in order to feel comfortable and be able to learn. But they might be held back through childhood as parents and teachers try to force them to sit still and be quiet and learn in conventional ways, which might result in increasingly worse episodes of self-harm.
All three of these people are disabled in some way.
People who can speak aloud and have reasonable control over their motor processing are often called “high-functioning,” and yet these autistics often struggle with employment, relationships, and executive function.
My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile.
“That means I am less functional than 99% of people. Does that seem mild to you?” I asked her.
But, you see, I can speak, and I can look people in the eyes, so they see my autism as “mild.” My autism affects those around me mildly but my autism does affect me severely.
There is no question that those who suffer from severe neuromotor difficulties are extremely disabled, and I am not in any way comparing myself to them.
In fact, I am specifically asking people to stop comparing me to them. It does them a disservice to assume that they have what I have, only worse.
It is this assumption that dehumanizes people like Ido Kedar and Carly Fleischmann. It is this assumption that leads to them and many like them being treated as unthinking, unfeeling, and unhearing. It is this assumption that drives them to beat their heads against the wall in frustration.
If they have what I have, but worse, then they must be so very autistic that they can’t function at all. They must have worse interpersonal skills, worse information processing, worse social awareness.
But that isn’t true at all.
Not only was my mind fully present and understanding everything, but I read fluently. I thought of retorts, jokes and comments all day long in my head. Only no one else knew.
So, I was talked to like a toddler, not given a real education, and kept bored and sad.-Ido Kedar, Vista del Mar Autism Conference
Don’t do it.
Don’t assume that an autistic person is so very autistic that they can’t even hear or understand you. Don’t assume that they cannot read just because they cannot use the toilet. Don’t assume that I am not disabled just because I can look you in the eyes and chat with you about the weather.
We have uneven skill sets.
Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am her opposite. I have great insight into people, think in words, can’t speak to save my life, and need 1:1 help.
-Ido Kedar, “Spectrum or Different?” May 2016-Ido Kedar, “Spectrum or Different?” May 2016
Ido Kedar does not have a more severe version of Temple Grandin’s autism or my own. His skill set is totally different.
My neuromotor difficulties are limited to burning myself while cooking dinner, or stumbling and falling on a walk. Ido Kedar’s neuromotor difficulties, on the other hand, mean that his body often walks itself right out of the room without his permission.
Yet Ido Kedar could probably blow my pragmatic language skills out of the water.
Does that mean we have nothing in common?
No, based on what he has written, I can see that we actually have many things in common.
As autistic people, we both know how it feels to lose oneself in a good stim, how it feels to forget to look at someone’s eyes, and how it feels to need prompting to start a task. We both struggle with anxiety and wonder how it feels to be the kind of person who moves through life effortlessly.
We both span the spectrum in one way or another.
But beyond those things, our situations are different and our needs are different.
What people like Ido Kedar need is an occupational therapist and maybe physiotherapist to help them get control of their body movements. They need someone to help them develop skill with a letter board and an iPad so they can finally express their thoughts and feelings.
Instead, they are often infantilized, institutionalized, or spend years being forced to work on their ABC’s when they would love to get their hands on a science textbook.
I, on the other hand, have always been recognized as being intelligent. Instead, I struggle to have my difficulties be recognized. What I need is someone to support me– to cook, to clean, to organize– to help me recover when tasks have gotten larger and more complicated than I can process. Ido Kedar longs for independence while I long for someone to depend on.
The system fails both of us, but in very different ways.
So please stop assuming that one kind of autism is “more autistic” than other kinds of autism.
Red isn’t “more spectrum” than green or blue. Apples aren’t “more fruit” than oranges. That’s not how it works.
The visibility of an autism trait doesn’t necessarily predict what that person can and cannot do or what supports they need most.
I shouldn’t be processing human speech, according to some. I shouldn’t be writing my thoughts. I shouldn’t even have thoughts. Well, I say, go listen to Beethoven’s Ninth Symphony and imagine writing it deaf and try to be a little humble about the brain’s unknown capacities.Ido Kedar – March 2019, http://www.idoinautismland.com
Don’t assume that a non-speaking autistic who doesn’t react to your presence in the room is unaware of the conversation.
Don’t assume that someone is not really autistic just because they make eye contact with you and can chat about the weather.
Don’t assume that a fluently-talkative autistic person is capable of processing what you have just said to them.
Don’t assume anything about an autistic person.
For seventy years (at least), people have been making assumptions about autistic people based on outward behaviour. Even the diagnostic criteria for autism is based on what is easily observable by an onlooker. They think that the stranger we act, the “more autistic” we are.
We are asking you to stop.
Ask us what we can and cannot do.
Even if it doesn’t look as though we can understand.
I have been learning about what autism is over the last few years and I think this is the most useful single article I’ve read. I’ve also shared it with relatives to help them understand.
Thanks for writing it.
First I wanted to say I read this article back in May when it was posted and I just never forgot it. Which is why, yesterday, when a few people from the clinic I work for (mainly occupational and speech therapy) were discussing diagnotic criteria and such I remembered this. I translated the whole thing to Portuguese because they don’t know English, and it was really just for personal use, but they really, really liked it and wanted to share it on our Facebook page. I was wondering if that would be ok. We would source it of course, make it clear that it’s a translation and put the original link.
If that’d be okay, please let me know. I love this article a lot and wish more people could read it
If I can add a little contructive critiscism.
We have to stop to represent it with a linear spectrum but a circular one which make easily understoodable how a spectrum is and how a color is an accumulation of many others of different intensities.
Neat explanation of the spectrum! However, the comparison to visible light isn’t *completely* right. Yes, red is a different colour than blue, but only because we observe and define them as such. They are actually just “more/less spectrum”, or rather, have longer or shorter wavelengths.
And as for being “not autistic, but on the spectrum” – darn, I’m guilty of that! Which makes me wonder, since the three examples had considerable difficulties with several skills while being proficient in others – what if you’re affected in most or all of the areas, but only slightly? Wouldn’t that be the “mild” kind? As opposed to having severe difficulties with every ability on that spectrum being much more disabling in general.
Thank you this was so helpful to read and learn!!!
That’s the best explanation I’ve ever seen. This should be required reading.
Yes!! That’s what I was thinking.
I am 81 years old and have never “fit in”. The more that I am learning about autism the better I can understand some of my traits that my teachers, instructors, and supervisors found to be quite vexing. From some of my earliest days my parents and older siblings depended on my observations and memory for locating mislaid tools and other objects. I am told that at age 2 years I went outside in the snow to find a hammer that had been left out the previous day and was successful.
My handwriting ability was a problem first used to shame me in second grade and my responce was to never give that teacher another page with my marks on it.
Wow Nathaniel. I’ve recently self identified as autistic. ( Just before my 76th birthday.) I wondered if there was anyone older than me to discover this. Now I know!
Wow! This is one of the best articles I have seen in this subject. Thank you so much! It has helped me understand my children so much better!
This was the most insightful article I have ever read and I thank you C.L Lynch for writing it. It spoke to me so deeply and I feel more empowered after having read it. Thank you.
This is a great article! Thank you
Great explanation! I like to think of autistic traits as being a mosaic rather than a spectrum. Each person has different abilities and challenges that are independent from each other.
Who is “neuro typical”? It seems that everyone I know has at least one of those differences. Brain differences seem to be ubiquitous; every brain works differently from every other brain. It is not reasonable to say “no one is a little autistic”. My observations seem to tell me that it is more likely that everyone is “a little autistic”, that autism is, indeed, a spectrum that includes most humans at some point. I realize that might seem outrageous to you; if my brain functions differently from yours, which one of us is “neurotypical”? I have no doubt that my brain functions differently; differently from anyone else in the world. As does each other person’s brain. Every brain is neurodiverse. This is as much as my addled brain can manage right now!
Except that you’re working from the misconception that so many people seem to have, which is that having one or two areas where you are slightly outside the very central peak of the bell-curve somehow makes you “a little autistic” – it doesn’t. Autism is a specific diagnosis. To get that diagnosis you have have have a certain LEVEL of difference in functioning within a NUMBER of areas. Just having a SUBTLE difference in one or two doesn’t make you a “bit” autistic, any more than having a craving for pickles makes you a “bit pregnant”. Or to put it another way – just because a recipe contains minced beef, or tomatoes, it doesn’t automatically mean it’s for spaghetti bolognese. And unfortunately, that same belief is often used to justify negating autistic people’s experiences, ableism and denying support and allowances that are legally mandated, because after all “everyone’s a bit autistic, just suck it up”.
I have not been diagnosed as having any atypical neurological patterns . BUT I am severly dysgraphic. Even with my best efforts i blend cursive and printing upper and lower case and misplaced spacing. While I was in the Air Force my sargents would find other duties for me when we were to have a parade because I was never able to master marching. I have never been able to learn any manner of dancing. I am however an excellent craftsman and am skilled in several trades. For many years I considered myself to be semiliterate because I could read but I couldn’t write. That changed when a wonderful woman and wife of a dyslexic husband and mother of three dyslexic children told me that I can write my thoughts and someone else can make them legible. She told me that my words were more important than my penmanship. The computer has been a wonderfully liberating tool.
Blindness is also a spectrum; I’m so nearsighted I can hardly see ten feet ahead of me without my glasses, and age is killing my nearsightedness, too. Would you call me blind?
You’re missing the point of the article. Autism isn’t about a single deviant trait. It’s about many traits, divergent enough to make performing in a normal life extremely difficult to impossible. Take a look at this bell curve: https://study.com/cimages/videopreview/videopreview-full/8o9chhe0qj.jpg. Autism would include people below -30 and above +30; the closer to the center, the more neurotypical you are.
Individual traits can be treated individually. A set of strong, collective traits can be disabling. Suggesting that “everybody is a little autistic” is as disrespectful to true people with Autism the same way that claiming my bad but easily correctable vision makes me blind. And it keeps society from understanding the full extent of the autism problem, particularly for those on the high end of the scale.
This is really helpful to me. I think I’m pretty well educated on the subject of autism, but this has cleared up a load of stuff that I hadn’t really grasped. Thank you.
Thank you for this post. I will add it to my list of ways to explain autism. I also found a quote recently that I added to it, it goes like this, “[So-called] Mild autism doesn’t mean one experiences autism mildly . . . It means YOU experience their autism mildy.” – Adam Walton
replying to Frickthoughts regarding everyone being “a little bit autistic“:
I understand what you’re saying, and I think the difference is going to be in the realm of clinical significance. Someone who is not good at dancing doesn’t necessarily have a clinical diagnosis of poor motor control. My ADHD and related executive function deficits are considered severe in some aspects, despite my having made high grades in school, because they significantly impact my day to day function. I have lost friends, nearly lost jobs, and lost money (for many different reasons), not to mention actually being lost in many different cities, all having to do with my executive functioning impairments. Secondary issues such as anxiety and depression have ensued. I am fortunate to have had the intellect and family support to earn a college degree, but real life is harder. If someone else said that they think they have a little ADHD because they occasionally forget where they put their glasses, my response would be “Not clinically significant!” And if someone indeed has a tiny bit of all of the traits listed on the spectrum above, that does not necessarily mean that they cross into the realm of clinically significant autism.
There comes a point where we are faced with what is clinically significant and what is personally significant. When my dancing ability is such that my partner stops in the middle of a number and chides me for not being able to dance it has become personally very significant.