Public education is looking too much like the autism industry.
When you’re autistic, the entire world is a puzzle, challenges lying in wait whether you’re ready to work them or not. You can’t parse the language of a teasing friend. Authority figures bear inscrutable faces. Personal truths bubble up from your guts at the worst possible moment. No one makes sense, and no one seems to care. When our circuits overload and we retreat to safety, protect ourselves, we’re perceived as being rude and cold and distant.
We make you uncomfortable, but you can go home and change. Autistics can’t, no matter what abled activists and allies insist.
We stay in our semi-separate spaces, his feet tucked against my thigh, orbits tethered, binary planets always, always connected.
They raise money to cure us, and train behavioral therapists to fix us, and force compliance upon us.
Being an autistic parent of an autistic child means navigating a world that doesn’t see us as whole while advocating for two people at the same time. Specialists don’t take autistic parents seriously, don’t trust that we know our own needs, let alone a child’s. How can we when we’re in need of special services and accommodations, too?
Being disabled means hundreds of thousands of people believe they always know better than you do. I’ve spent my life—both before my epilepsy and autism and mental illness diagnoses and after—listening to authority figures and peers tell me who I am.
Disabled allyship rarely extends to those who are actually disabled. We answer their questions, and they choose not to listen.
Psychological models of autism tend to work on the cognitive level of explanation, with some attempting to make links to biological and neurological data. In order to produce cognitive models, all of them rely on accounts of behaviour to make inferences from. A major criticism of these models, is that they are formed (with the exception of monotropism theory, see section 2.5) from a perspective of a cognitive psychology overly restricted by its total adherence to scientific method as the gold standard, which do not value the input of ‘autistic voices’, or that of sociological viewpoints on autism. This has come about for a number of reasons, one of which being the splitting of levels of explanation into subject ‘silos’ (Arnold, 2010). Another was the triumphant victory that biomedical explanations earned at the expense of Bettleheim’s theory of the ‘refrigerator mother’. This victory would not just produce a rejection of this theory however, but it seems a total rejection of psycho-sociological reflection upon what it is to be autistic, a fatal flaw that only alienated the voices of autistic people further. The victory spared the mother, yet lay the blame at the neurology of the ‘autistic person’ themselves, in the sense that there was something medically deficient about the ‘autistic person’, and if one could only find the site of the ‘lesion’ one could find a ‘cure’ (Happe, 1994a). Assumptions of what autism is are enshrined in the diagnostic criteria of the DSM-IV (1994) and ICD-10 (1992) and based upon interpretations of observed behavioural traits. All the psychological theories base their models within this criterion of behaviour led framework, although in the monotropism theory (see section 2.5), this is thankfully balanced by the accounts of lived experience of ‘autistic people’ themselves, including one of the authors of the paper, Wendy Lawson.
The current psychological models seem somewhat inadequate at drawing the links between biology and behaviour, but even more so, between biology and the lived experience of autistic subjectivity, often attempting to obscure the ‘autistic voice’ or ignore it, in an attempt to reduce autistic behaviours to definable objective criteria. The theory of monotropism, is a welcome departure from this theoretical dominance however, largely basing its account in subjective accounts. In so doing, this theory is more applicable to the vast array of subjective differences experienced by autistic people, although perhaps not all. Unfortunately, it does not seem to have achieved the widespread recognition enjoyed by the other theories.
“…right from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.” (Williams, 1996: 14).
Source: So what exactly is autism?
The experience of stress is one that is nigh-on universal amongst autistic people, along with the sense of overload (whether sensory or emotional).
Source: So what exactly is autism?
The theory of Monotropism (Murray et al., 2005) argues that the central core feature in autism refers to an atypical strategy being employed in the distribution of attention, which is suggested to be the basis of the ‘restricted range of interests’ criteria inherent in the diagnostic criteria of both the DSM-IV (1994) and ICD-10 (1992), and further found in the testimonies of subjective experience from autistic people themselves (Grandin, 1995; Lawson, 1998, Williams, 1994). Monotropism suggests that the amount of attention available to an individual at any one time is necessarily limited, as can be found amongst numerous cognitive studies. Thus the shaping of many cognitive processes depends upon a competition between mental processes for this scarce resource. Murray et al. (2005) propose that strategies for the way attention is used is normally distributed, and to a large degree genetically determined, between those with a broad use of attention, and those who concentrate attention on a small number of ‘interests’ (likened to the difference between a dissipated ‘diffused light’ and a ‘torch beam’). The authors propose that those at the tightly focused end of this spectrum are those diagnosed as on the autism spectrum. It is suggested by Murray et al. (2005) that social interaction, the use of language, and the shifting of object attention (implicated by other psychological theories) are all tasks that require a broad attention, and are inhibited by a narrow use of attention.
This theory suggests a number of features found in autistic subjective accounts that are not attended to by the other psychological theories, including E-S theory (see section 2.4). For instance, how individuals on the autism spectrum show a tendency toward either being passionately interested in a task or phenomena, or not interested at all, or how an unanticipated change ‘within the attentional tunnel’ can lead to a catastrophic disconnection from a previously ‘safe’ state of mind.
If employing a monotropic interest system, the ability to use information gained in the past is compromised, as information is gained only in relation to a narrow set of interests. Thus ‘top- down’ or ‘whole picture’ processing is not ‘dispreferred’ as such, but will tend to be idiosyncratic and resistant to change or criticism. This resistance is not fully explained by a ‘systemising’ tendency (Baron-Cohen, 2008).
Monotropism also suggests a reason for the sensory integration difficulties found in the accounts of autistic people, as they suggest there is a ‘hyper-awareness’ of phenomena within the attentional tunnel, but hypo-sensitivity to phenomena outside of it. Also, that an interest in the social world may not occur in the early years of life:
‘We suggest that the uneven skills profile in autism depends on which interests have been fired into monotropic superdrive and which have been left unstimulated by any felt experience.’ (Murray et al. 2005: 143).
Indeed, the recognition of others may only occur if connected to the fulfilling of interests that the autistic individual has, otherwise the existence of others may not be registered at all. A monotropic focus leads to a fragmented view of the world, and from such a viewpoint it is exceptionally hard to make sense of social interactions, leading to potentially both apparent and real ‘theory of mind’ difficulties. Rather than being a ‘core deficit’ however, this is described as a tendency produced as a consequence of a monotropic interest system.
Source: So what exactly is autism?