A spectrum (also called gradient) - (plural: spectra or spectrums) is a range of consecutive colours or sounds or other varieties. This term is often used in physics. Wikipedia
When we talk about ASD one of the first things we do is pronounce the abbreviation completely; Autism Spectrum Disorder. About the last word, disorder, I’ve already written. Today I’d like to discuss the second word, spectrum.
As the definition indicates, a spectrum is a range of successive diversities. In my opinion, this is an incorrect representation of autism. It leads to different problems when thinking about autism. It leads to the labeling of forms of autism, the thinking that there are “not bad” and “heavy” forms of autism, that you can place someone on a straight line and so on by means of some outward displays. I think it is not as easy as that. People with autism are very different, but classifying them in a straight line doesn’t seem possible to me.
The cloud called autism
I think it’s better to think about autism as a cloud. A very big cloud with all kinds of varieties. It’s not a 2D scale on which you can classify people; it’s a 3D cloud in which people move around. By approaching it that way, it also immediately becomes clear why things like “high functioning” and “low functioning” don’t work. It may well be that someone who is not verbal can communicate excellently via the internet for example or with sign language. In writing, there is no threshold for communication. Also, someone who is very strong verbally can have a lot of trouble in a social situation (on- or offline).
If we look at autism as a spectrum, it is very difficult to classify people. And that is something we like to do as people; classify. We classify everything, we want to give everything a place that is clear and fixed. When things change, we simply rearrange it. But then we forget that some things are so big that they cannot be fixed in one direction.
My very own little cloud
I look at autism as a cloud of different characteristics and difficulties. Every autistic person has his or her own cloud within the great cloud of autism. That’s why my cloud can look so much like that of another autistic person. But it is my own cloud! It is my qualities and my difficulties. They sometimes come from the cloud called autism and since other autistic people draw from the same cloud, we therefore look alike. That makes that we can understand each other better than someone who has nothing from the cloud.
However, my cloud is not static, it lives and moves through the big cloud. One day I’m in one place in the cloud where some characteristics are, and the next day I’m floating somewhere else in the same cloud. I’m still an autistic person (I can’t get out of the cloud) but the outer varieties have changed.
But it is all mine. My cloud, my autism, is unique. It’s useless to assign labels to me if in a day or two things will be very different for me.
To say it like Olaf, I have my own cloud!
But I do float through the larger cloud of autism and that’s why I look like other autistic people. And they look like me.
Lists of properties
It makes a lot of sense for people to make lists. Lists for groceries, roadmaps, characteristics of autism. What has happened, however, is that these lists are now used to list autistic people. Autism is classified by a straight line from “heavy” to “light”, or from “level 1” to “level 3”, or from “moron” to “brilliant”… See where I’m going? Labeling people is a big problem. People look at the outward appearances and determine where on the line you are. They ignore the rest of the traits, whether they’re good or bad, doesn’t matter.
Lists of attributes are things that belong in a computer game. Not in the real world. People aren’t property lists. Then why would we see autism like that? Then why are we looking at autism in different “levels”? And why would we want to classify autistic people in a straight line?
The answer to this question is simple on one side; the amount of care an autistic person needs. Very coldly put, an autistic person needs less care on level 1 than on level 3. It is then clear to the authority what it will cost. It is then clear to cold organisations in which box the number you are as a human being belongs.
Fortunately, there is already a lot of caregivers who (far) distance themselves from this. People are not a number. Care is not something that belongs in pigeonholes. But it’s the doctors’ own job to classify diseases, disorders and disorders according to the amount of care that is needed. More care means it’s more serious. Less care means less bad.
But every autistic person is different. Every autistic person is also a human being and every person is different. It is therefore impossible to say what an autistic person needs help with by only looking at the “level of autism” they have.
The care I have had is all about the individual and not about the generalities, fortunately.
Forget the labels
The best way to think about autism is not in labels. Not in specific, truncated pieces. Don’t think about “high or low functioning”. It’s all autism. It’s all the same cloud. Where I’m in the cloud can be very different from where another autistic person is in the cloud, but we’re both in it. It can also be that someone only has a very small part of the cloud very strong and someone else has a little bit of everything. Still, it’s both autism.
Labelling people is wrong and leads to problems. It can vary from day to day. With one autistic person, those changes will be more extreme than with another. Some autistic people will always stay in place within the autism cloud, while others will fly through the cloud like a toddler through a playground. But all autistic people are in the same autism cloud.
If you want to give it a name it has become a lot simpler; it is autism. No other labels needed. Is there a difference between autistic people? Yes! Just like all of us. But that doesn’t mean you have to put labels on it right away.