“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 love what trying to get across. But if only you knew what a spectrum was. You need a different analogy altogether because the electromagnetic spectrum (of which light is a part) is based on wavelength. It is quantitative. And it IS a scale. I think, sticking with the colour theme it would be a better analogy to say ‘Autistic Palette’. People are correctly interpreting spectrum, but it has been incorrectly associated with autism.
Hello! Very illuminating article, thank you. Could you share your references for the autism spectrum used in this article?
I was about to say something similar
I absolutely adore this article, but on the semantics side the visible light spectrum is a very literal measurement of wavelength haha
The author’s right in the way people figuratively communicate using the word spectrum and how they’re applying it to autism – they should maybe be looking at both the tone and the shade as in an artistic view, the literal physics view isn’t quite so applicable. Maybe we don’t imply the author doesn’t totally know what they’re doing here 🙂
This was supposed to be a reply to Zephyrtog above, but I’m on my phone and can’t tell if that happened the way I wanted it to
Very good article. Hopefully pieces like will start to get the message through that autistic people have wildely different lived experiences as do their families. I for one am sick and tired of the homogonisation that seems to occur not just from outside the autism community by Joe Public, but also from within. We have different camps within the community that claim to speak for and understand the whole sepctrum. As the author rightly points out there are some common themes connecting all autistics but the lived experiences of one part of the spectrum are vastly different to other parts. Different issues, different problems, different skills, different lives and yet we often see one part speaking for and making assumptions about the other. This occurs both within the community and from outside. Let’s treat all people on the spectrum as individuals and respect their lived experiences and when they unable to express those exepriences directly lets respect the lived experiences of those who love them and advocate for them.
Thank you so much for writing this. My daughter was diagnosed with autism 5 years ago and after reading this, for the first time I feel like I understand wtf that means.
So, This is an interesting way of viewing the “Spectrum”. I am a mother of five children four are on the spectrum my oldest is 30 my youngest is 6. I would have described what this Author did, they way she did, right up until the time I had a very low functioning Autistic child who is tragically non verbal. I see the spectrum now with 30 years worth of experience as a Little Quirky, Definitely Autistic and or Tragically Autistic. If you have not had children who function zero ability to communicate dont think for a second I am going to fell bad for you cognitive functioning when your a published Author and can support yourself and make your needs known. Tragic Autism exists anytime you wanna see what that looks like come on over for a visit and after 72 hours you will believe what I do that Autism is a little quirky, definitely autistic and tragically autistic.
Being non-verbal does not mean that your child is ‘low-functioning’ (which is not a real thing anyway; every person with autism is ‘high functioning’ and ‘low functioning’ in different ways, which is the whole point of this article). Just became your child cannot speak does not mean they cannot understand, or that they have a low intellect. Your child may be more disabled *in our society*, because that is largely what being disabled is; being stuck in a world that is not built for you and your own abilities and struggles. For example, being in a wheelchair would be much less disabling if everywhere had ramps, it was easy to find housing with low counters and cabinets, and stores only stocked items up to where they can be reached from a seated position. However, that’s not the case, so being in a wheelchair is considered to be very disabling. Likewise, just because your child does not (or does not yet) speak does not mean that there is something inherently wrong with them, it just means they are disabled by living in a society that prioritizes verbal speech. It’s quite possible your child could learn to use other means of communicating, such as by writing on a computer or using a picture board, and that would decrease the amount of disability they experience whenever they are in a place and time that allows them to use the technology that helps them communicate. The fact that you refer to your own child’s existence as ‘tragic’ is, quite honestly, horrifying. Your child is autistic, not dead. They are alive and it is your duty as a parent to help them be as fully themselves as possible, to give them a life that is worth living. Even if that doesn’t include speaking aloud.
Frankly as someone with autism myself (who IS verbal, but struggles greatly in other areas), this article was incredibly helpful. Someone I spoke to recently pulled the ‘well, we’re all on a spectrum’ card (they are NT) and I was at a complete loss as to what to say. They’ve had similar responses to other differences or disabilities I experience. I may send them this, though I have to be prepared for that to be dismissed too, unfortunately. Thank you so much for writing this, CL Lynch, it is incredibly helpful and well-written.
Genevieve, my son is profoundly autistic. At 29 he is minimally verbal – can use single words to request things – but was completely nonverbal until age 8. He did not know the word “mom” until he was 10, and did not ever call me “mom” unprompted till he was about 13.
I get where you are coming from, but it really does not help to try to one-up another person’s suffering.
The only reason I no longer call my son nonverbal is because my daughter (MS in low-incidence SpEd) informed me that the ability to use gestures or any mouth sounds to indicate what they want or need, is verbal communication. Verbal does not literally mean mouth speech, it includes any ability to make others aware of one’s needs or preferences. So, unless your son is literally incapable of indicating when he is hungry, sleepy, hurt, or needs to go to the bathroom, he has more than zero ability to communicate. Even pointing at a desired food item is communication.
I wish you the best and I assure you that your youngest can make progress. It will be glacial progress, compared to other people, but progress nonetheless. I wish you and your family the best.
It is a multidimensional spectrum with as many dimensions as traits you want to assign. I don’t see a whole lot of progress in understanding what is going on until they track down the genetic, epigenetic and environmental factors involved. Trying to organize it by symptom is a makeshift solution until we really understand what is going on in the brain.
Great article and explained clearly, my son has Autism and this will be helpful for family and friends to read. Sometimes us parents of Autistic children are guilty of expecting others to know about Autism, went its down to us to help educate. The interview was soo positive, what a Witty and funny girl. Caroline Hards Guernsey
Could a person who says “I’m not autistic but I’m definitely ‘on the spectrum'” have Broad Autism Phenotype (BAP)? Their comment could be charitably read as trying to say that (but without understanding the technical psychological terminology). The boundary between BAP and ASD is unclear–the diagnostic cutoff for ASD isn’t entirely consistent, it varies from clinician to clinician (and, in the case of multidisciplinary team diagnosis, from team to team), and the same individual may be viewed as being over the line by one clinician/team and not by another – but these borderline individuals, who straddle the boundary between ASD and non-ASD, if they don’t have ASD, they almost certainly do have a significant degree of BAP. (Which of course, is not a “disorder”, it is just a “phenotype”, but then again, “disorders” are “phenotypes”, or collections of them.)
So, you are saying spectrum does not mean that autistics only have one or two of the autistic characteristics, but all of them. But it still must mean that they have those characteristics at different levels, or those characteristics impair their ability to engage in society at different levels. My view of a spectrum was not that some have sensory problems and nothing else, but rather that the intensity of their autism means that some can complete school successfully, get married and get and keep a job, where others cannot engage in schooling, so cannot learn to read or write, cannot engage in society, cannot engage in a work place appropriately, and cannot function independently as an adult. And there are all the various gradations in between.
Having said all that, I guess the same is the case for neurotypicals as well.
Im a year late to this party, but in the last year I’ve recently found out that I’m autistic. You have caused me to have a meltdown that I didn’t know I needed to have. Thank You! I so understand what you mean by “depend on” I hope that you have or find someone who fits that role.
Thank you so much. This is absolutely life changing for me.