Let’s start with linguistics:
The way we label things around us means a great deal. Let’s look at the widely used terms in an ‘autistic way’, i.e., literally (without adding any personal connotation – neither positive, nor negative) – each word in this section has its dictionary meaning.
- Autism Spectrum:
Spectrum is defined as ‘the entire range of particular type of thing, arranged by degree or quality, etc.’; it is used to classify something in terms of position on a scale between two extreme points.
And there are infinite number of spectra we can single out, e.g., according to Claridge (1997; 2002): all people are on the schizotypy spectrum, with a high score at one end (high schizotype) and low score at the opposite end. Claridge (2010) suggests that it “runs through the general population and describes the structure of human individual differences.”
Thus, in accordance with the definition, each and every person is on many different the spectra – either at the high/low end or anywhere in between. Isn’t it logical to conclude that to ‘be on the autism spectrum’ (and all people may be seen on it) is not enough to be diagnosed ‘autistic’? Like any other spectrum disorder (e.g., selective mutism), some may just have ‘a dash of autism’ (Asperger 1944), others – mild features (‘autistic traits/ or ‘residual autism’), or broader autism phenotype (BAP)*, while at the extreme end we have those who need 24/7 support and cannot function independently.
* Broader autism phenotype (BAP) refers to the expression of behavioral and cognitive dispositions similar to autism spectrum disorder (Patric Bolton1994; Piven et al. 1997). About half of parents of autistic children share significant overlap with symptoms common in autism (Wolf et al. 1988) and some are diagnosed with autism or Asperger syndrome themselves.
To narrow the term (to make it meaningful) we can add another word to ‘autism spectrum’ – ‘disorder’ [“a problem which affects someone’s mind or body”; “a disturbance in physical or mental health or function”] – and it will give us a diagnosis (ASD) – thus limiting the number of people on the autism spectrum to those who need 1-3 levels of support (DSM-5). (Former Asperger syndrome is in ‘ASD – Level 1’ category.)
Disorder or condition?
Some prefer to refer to ASD as ‘autism spectrum condition’. Is it in order to avoid negative connotation? However, two of the literal meanings of ‘condition’ are synonymous to ‘medical problems’:
Condition: an illness or other medical problem, e.g., ‘a heart condition’; state of physical or mental health’, e.g. He remains in a critical condition in hospital.
A group of heterogeneous disorders.
At present, ASD is recognised as a heterogeneous disorder, or even, a group of heterogeneous disorders.
Heterogeneity: the quality or state of being diverse, different in kind, unlike; having widely dissimilar elements or constituents; being different or opposite in structure, quality, etc.
We can say, it is not ‘autism’ but rather ‘autismS’ that have different causes, ‘common pathways’ (similar symptomatology), and different outcomes. This interpretation of autism is more useful than 3 levels of support because it provides explanations of differences (causes, needs, etc.) that allow to create personalised support to each and every autistic person.
To inform clinical advances, we need theoretical and empirical subgroups (Happé & Conway 2016). There are subgroups of ASD with different underlying mechanisms (though the behavioural manifestation is the same) (e.g., Bryn et al. 2016; Martinez-Murcia et al. 2016, Brain et al. 2016 and others).
Physical and Mental Health in ASD
I don’t believe that the notion of ‘pure autism’ is very helpful. Comorbidities impact on ASD and vice versa. For example, learning disabilities without autism are very different in autistic individuals.
Autism seldom (if ever) occurs in its ‘pure form’. There is a wide range of physical and mental health conditions that appear with greater frequency in individuals with ASD compared to non-ASD populations: Gastrointestinal disorders occur in 46% to 84% of children with ASD. 78% of children with autism have at least one mental health condition and nearly half have two mental health conditions or more (Connor et al. 2021).
10-77% of individuals with ASD have at least one medical condition (Muskens et al. 2017; Betancur 2011) and 63-78% have at least one co-occurring psychiatric condition (Simonoff et al. 2008; Strang et al. 2012): bipolar disorder, psychosis, ADHD, anxiety, personality disorders, intellectual disability, Tourette Syndrome, mood disorders, anorexia nervosa, depression, early-onset dementia and others.
It brings us to the first metaphor -
‘Autism as a fruit salad’ (Donna Williams).
Donna Williams (2006) compares autism (or rather, ‘a cluster of conditions’) with ‘Fruit Salad’ which might appear to be one thing but it’s made up of many different things put together. Then, if we know what makes up the fruit salad and which ingredients are causing us advantages and disadvantages, we have a better idea which piece is an issue rather than blaming the entire fruit salad. When we know what something is actually made up of, then it’s like being given an instruction manual, we know how best to work with each of the different parts.
“Some people will have only an orange, an apple and a pear in their fruit salad: personality, environment and information-processing challenges. Others will have to have many more pieces of fruit in their salad to result in the developmental impact called Autism.” (Donna Williams)
In her book, The Jumbled Jigsaw: An Insider’s Approach to the Treatment of Autistic Spectrum ‘Fruit Salads’, exposes ASDs not as a single entity but as the combination of a whole range of untreated underlying conditions: from mood, anxiety, obsessive-compulsive and tics disorders to dependency, identity and personality issues,
information processing, sensory perceptual problems and gut and immune disorders.
She demonstrates how such common conditions can form a ‘cluster condition’ that underpin the label ‘ASD’
Jigsaw Puzzles – (in both literal and metaphorical meanings)
Jigsaw puzzles: (1) a picture stuck onto wood or cardboard and cut into pieces of different shapes that must be joined together correctly to form a picture again; a puzzle in which the player has to reassemble a picture that has been mounted on wooden or cardboard base and cut into a large number of irregularly shaped interlocking pieces;
(2) a complicated or mysterious problem that can only be solved or explained by connecting several pieces of information;
(3) any complex, confusing situation, condition, or item, as one composed of seemingly diverse or unrelated elements;
(4) a complicated and mysterious problem that can only be solved or explained by connecting several pieces of information.
Many autistic children love jigsaw puzzles. They can spend hours enjoying the activity:
“When I do puzzles, I pay more attention to the pieces than to the pictures. All the pieces might look similar, but in fact, if you examine them closely, you’ll see that each one is minutely different in outline.
I don’t begin the puzzle by working on the outside edges. Slotting two pieces together is the fun part for me and rushing to the completion of the puzzle defeats the whole point. I don’t take much pleasure from finishing it because that means the slotting together – the good part – is over. Once it done, I like to flip it over so it’s back to front. I love inspecting how the pieces all fit together from the plain, reverse side, too.” (Naoki Higashida)
“Ever since the psychologists saw me work on the puzzles, they never again said that I was mentally retarded, although they did not hesitate to mention that I had autism. I could tolerate what I have, which is autism. But I could not accept a diagnosis of something that I do not have, mental retardation. I remained thankful to my jigsaw-puzzle solving ability because I got a better diagnosis, which was honest and acceptable to my ego.” (Tito Mukhopadhyay)
When used metaphorically, it emphasises the complexity and fascinating nature of autism:
‘Autism’ is spoken of by some people as a jigsaw with a missing piece. I experienced my own ‘autism’ as one bucket with several different jigsaws in it, jumbled together and all missing a few pieces each but with a few extra pieces that didn’t belong to any of these jigsaws. The first dilemma for me was sorting out which pieces belonged to which jigsaws. From there, I had to work out which pieces were missing and which ones weren’t supposed to be in my bucket at all.” (Donna Williams)
It's hard (at least, for me) to see any negative connotation of the phrase. Autism isn’t simple, is it? We still cannot assemble many pieces we have in order to see the whole picture. Or, perhaps, we are trying to slot the pieces from several different puzzles into the picture we have formed in our mind, and don’t want to accept that there are several possible pictures that can be formed from the many pieces we’ve already collected.