“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.
If difficulties with executive functions is only one possible part of one of the criteria for a diagnosis of autism amongst a wide range of difficulties, should adhd be considered a spectrum disorder (which I believe it has recently been described as) when it is basically, and has recently been renamed (I think) as, ‘executive function disorder’?
What are your views on this?
first of all, medications that work consistently for adhd do not work at all for autism. this is a sign that they have different core roots. second, even if people with adhd had the same types of executive dysfunction that autists do then it shouldn’t be considered part of the spectrum for the same reason that sensory processing disorder isn’t considered a part of autism because it’s only one trait rather than a part of a hollistic experience.
The terms ‘disorder’ doesn’t resonate with me in the first place. These neurotypes have a different ‘order’ to neurotypical people, that’s all. All ‘types’ have something to contribute to this world but negative labels don’t promote this. It would help if the word ‘difficulties’ could be reworded somehow to indicate that there are are challenges for autistic people because their needs aren’t well catered for in the neurotypical world.
For example so called ‘little’ people who’s homes have been adapted for them don’t have any challenges or ‘difficulties’ at home. It’s only when they go out into a world that caters for typically sized people that they experience those challenges. It’s all relative.
There are autistic people who need extra support but it doesn’t mean they don’t have something to offer in their own way. It’s been shown that people who are non verbal etc have been considered unable to communicate at all but this has long been disproven in many cases. Many autistic people don’t get a chance to contribute what they are capable of due to misunderstanding and prejudice.
OMFGA! This is literally the single best explanation of the autistic spectrum I have ever seen! Now when others ask me about it, I can just link them to this page.
I’m unclear on how the bullet points below the colors work. It seems to say that if you have good social awareness, that’s an autism symptom. Whereas repetitive behaviors are a known autism trait, and that’s written correctly?
(Rather a late reply)
It indicates that if you have an issue in that area then you can tick that box, not that if you are good at that area you can tick the box.
I am thinking this is an amazing article. I am also thinking about DIR Floor TIme. Gil Tippy is a friend of mine and before we realized that my “dyspraxic” kiddo had a bunch of other comorbidities we finally understood that he has autism. But the whole time we were going through testing and diagnosis and fighting the school system that Gil was talking about how DIR Floor Time treated autistic kiddos like human beings even if they were nonverbal and how ABA was not very human. And right now I am taking classes at the JC and my kid just turned 13 and their is such a wide misunderstanding of what being autistic means. But right now I am thinking about the paper I am writing in college about neurdivergent people and their interactions with law enforcement and how they get brutalized all the time and are over represented in prison. Thank you for this article. You should do a TED talk.
Thank you so much for this highly illuminating piece. Despite having family members with autism, I never really understood it as I now do. Please write more!
Asd is condition
Oh, gods above and below, thank you for writing this.
There’s about 5000 more pages of thoughts I have about this article swirling madly through my head like what you’d get sending a tornado through a pile of leaves if you’d raked up an entire forest in autumn, but I can’t actually cohere any of them through my keyboard at the moment so I’m going to leave it at that, at least for now.
That‘s right! I’m also on the autism spectrum and I know someone who is also on the autism spectrum but is much more conspicuous than I am. My mom always says that that one is more on the spectrum than me, even though I’ve been telling her all along that you’re no more or less on the spectrum.
Big spike in the orange [monotropic] and green [sensory oddities]–plus massive ADD–but I am NOT autistic. My nature has no known name; whatever it is, it is coherent enough to be outside the spectrum shown [can’t explain this much better.] A trained counselor and a doctor have agreed. I have never felt at home with anyone’s labels, and I say we need still further evolution of the neuroatypical color-hypersolid.
I know best who or what I am. No one can tell my story for me. I’d rather remain nameless forever than spend any more time being called something I am not. I wish the same respect for others in a similar condition, whose comments I have not yet read, as well as those who have found a suitable word, and I thank you all for helping start this process.
This is the best article that I have read recently!
Havinf a daughter who is neurodiverse this has really helped.
I now understand why an “ADOS” assessment also included ADHD, SLT, ADI-R, Cognative and dyslexia assessments?
This should be compulsory reading for parents with neurodiverse kids.
David C: I’m so glad that your daughter has a father who is being supportive of her neurology. And in that spirit, I hope you won’t be offended if I clarify the difference between neurodiversity and neurodivergence.
Neurodiversity is a word that describes the wide range of neurological states that people may have, including those people who are neurotypical. It’s a movement aimed at expanding what is recognised as part of the normal variation when it comes to neurological status. Once society recognises that, and accepts that people are just as valid regardless of their neurostatus, then we can hopefully work to eradicate the ableism around autistic people specifically, and other ND people in general.
Neurodivergence/neurodivergent describes a person, people, difference or condition that doesn’t fit into that very narrow category of what is described as neurotypical – and which is actually very wide-ranging. While initially a term used to describe autistics, and then later autistics, ADHD, etc, the term is now expanded to refer to anyone who experiences the world in a different way because of neurological issues. This most obviously refers to the neurodevelopmental issues like autism, ADHD, Tourette Syndrome, intellectual disabilities (whether GDD or as part of other disorders like Down Syndrome or Fragile X), dyspraxia, SLDs (dyslexia, dyscalculia, dysgraphia etc), fetal alcohol spectrum disorders and so on. But it also includes those dealing with personality disorders, trauma-based reactions/disorders and other mental illnesses or structural/functional issues with the brain itself (eg: epilepsy, TBI, stroke etc).
The Tl;Dr – Basically, if you’re referring to a person as ND, then they’re neurodivergent. Neurodiversity refers to a movement to educate the world that different neurotypes exist and that they deserve the same protections, respect, dignity and acceptance as neurotypical people.
Wow. A thorough explanation and so visual for those of us who tend to “see” things rather than “hear” them. My son was diagnosed as “high functioning autistic” when he was 28, but the psychologist did nothing to explain just what his abilities were and what supports he needed. For me, as a widowed mom, it’s been a real lonely learning process. There is not enough awareness of adult autism in the media. Do we really think that all children “outgrow” autism? When my husband died three years ago, there were very few resources I could find to help my son process his loss and mourn. Like most parents of those with autism, I made it up as I went along. I’d love to buy you a diet Pepsi, C.L!
Re: “Do we really think that all children “outgrow” autism?” I think there is documentation out there showing at one point on the calendar, like 1970s, the paid professionals did indeed think and publish that about autistic children, although they might not have used the ‘all’. But, yeah, it is why a number of people my age now, 59, and around that age, weren’t diagnosed in the 1970s and 80s when we were in our teens and 20s.