Anyone with any connection to Autism in just about anyway will have heard the words “On The Spectrum”. I have even seen in some social media groups the acronym OTS to refer to is in short hand. But what is it and what does it really mean to when we say “On The Spectrum”. What are we implying, how are we defining, is it yet another example of applying functioning labels? It’s a kind of catch all phrase that many people use at different times, myself included, but have we thought about what we are saying I wonder?
Spectrum is a word that conjure up in our minds, well mine at least, most commonly an image of a gradient of colour progressing along in shades moving from light to dark, or dark to light. I have heard it said the full spectrum of colour, the full spectrum of sound. I have an idea of a colour spectrum being developed from the blending of the colours of a rainbow. It’s a vibrant and potent image.
You do not need to spend much time around autism and autistic groups on social media or autism peak bodies to see the spectrum represented visually in terms of colour. I’ve seen this in many iterations, from colourful puzzle pieces, colourful ribbons, spectrums of colour grading across the banner of websites. Colourful tattoos. These can be wonderful, vibrant eye-catching and attention grabbing images, and they are wonderful.
I suspect the colour gradient idea of representing Autism is almost as ubiquitous as the puzzle piece. I’m not a fan of the puzzle piece myself. It’s a complex thing but there are a couple of reasons. Without going in to detail primarily this is due to its connection and identification with the horrendous Autism Speaks organisation. I also think it has connotations of puzzles to solve or puzzles to fit. I am not a missing piece that needs to be fitted in somewhere. It is a very recognisable symbol however it is important to note that many Autistic people have rejected its use as a valid symbol or identifier for Autistic advocacy and identification.
In some respects it is can seem to be reasonable idea to think that perhaps the use of the term “The spectrum” is preferable to unhelpful functioning labels like Hight or Low functioning. I don’t think this is the case though in fact, when I think about it, it seems to me that it is actually no better at all. The reason I think this is that our concept of spectrum is not all-encompassing enough.
Our concept of a linear kind of gradient is also, I believe, linked quite closely with the high and low functioning ideas. It is in the minds of many I think an idea that it starts at one end of high functioning and runs a long a gradient of colour to low functioning. Almost as though at the light end is High Functioning or “Autism Lite” and at the dark end is Low Functioning and “Classic” or “Kanner’s” or “Real Autism”. Not a helpful idea at all and it does not take into account the reality of how day to day functioning is different from task to task, from day to day, from person to person and from moment to moment. It is such a changeable thing. There are things within the very same person that would be considered high functioning and things that would be considered low functioning. There are just so many possibilities that the idea of a linear or graduating spectrum is just not a helpful, or, dare I say it, accurate depiction of autism or autistic people at all, which, predefines expectations and capacities of autistic people.
The major issue in this I think is that if we place an autistic person in our minds at one end or the other we pre-define ideas about what their abilities, capacities, skills and challenges are without taking into consideration the actual person involved. At times also autistic advocates struggle to have a voice in situations where there is a judgement made that they are not able to speak for or about other autistics because they are too high functioning, they are not at the “severe” end of the spectrum like the ones they seek to advocate for.
If this idea of spectrum is not helpful how can our understanding and image of what the spectrum adapt to be a more encompassing and more accurate idea and understanding of what the Autism spectrum is and what it means for an Autistic person to be “On The Spectrum?” Some may think the idea of spectrum could be dispensed with to deal with this issue as many advocates are trying to dispense with functioning labels. This is simply not feasible. There is far too much identification of the spectrum, the symbolism of colour to simply dispense with it, and of course it is a virtual impossibility as the very word spectrum is in the actual name of what we autistics are in fact diagnosed with in the formal sense. It is, let’s not forget, the Autistic Spectrum.
If the idea of a linear or gradation spectrum is not a reasonable idea then what is? What is both a helpful and plausible reimagining of this idea? If it isn’t a linear spectrum what kind of spectrum is it? I believe that the best image we can have to represent this idea of spectrum is an image of infinity. An infinity symbol similar to a figure eight has no beginning and end it just keeps going, the start and end point is everywhere all at once.
Think about it for a moment. The spectrum, infinite possibilities. Infinite possibilities of combinations of skills and challenges. Infinite different combinations of needs for support and capacities for greatness. It encompasses that idea that is embodied in the quotation “if you’ve met one autistic person then you’ve met one autistic person”. Just as every Allistic person is different and can’t be defined on a line of definition so is every Âûtistic person. Essentially we are all unique.
The importance of this is easily overlooked, and this idea can easily be dismissed as being pedantic. But I don’t think it should be, in order to best support autistic people we must see them as unique human beings. If we allow a kind of placing of autistic people somewhere on a linear line then it becomes that much more difficult to consider that person as a unique person. By insisting on this uniqueness we make way for them to be seen as an individual, for real enquiry in to what their needs are, what their skills and capacities are, and the development of the truly individualised development of support where it is needed. The alternative, essentially what we have now in many cases, is a grab bag of ideas to apply to that person because they are in a particular position along the imaginary graduated line of the spectrum.
Just as the three primary colours can be mixed together into essentially infinite combinations to develop infinite hues and shades so is the Autistic spectrum an infinite mix of neurological reality that results in an infinite mix of autistic people being on this planet we call earth.