This is a list of useful research papers and Commissioned documents that have changed how we think about autistic people, and how we respond to their distress and their brain events.Useful New Autism Info for Care Settings
Autism. Nearly 80 years on from the original misunderstandings in the 1940s. So, what’s changed, in research? Almost everything.Autism: Some Vital Research Links
Are you confused, because you attended a lecture reading out the myths from the original 1940s version? Welcome to this very important update.
The old 1940s version of autism has turned out to be based on very poor evidence, and deserves a decent burial.
What’s it like, trying to grow up in a world that wants to see you as a fault, because that’s what two men said, 80 years ago, after looking at a handful of mostly male, white children with profound support needs?Autism: Some Vital Research Links
A diagnosis of ASD requires identification of a child’s “persistent deficits” and “clinically significant symptoms” in two domains (American Psychiatric Association 2013). Hence, at the time of parents’ first experience with ASD, they encounter a deficit-oriented framework that is aimed at identifying traits that their child does not have and behaviors that their child is lacking. Following diagnosis, they enter an early intervention system that seeks to further assess their child’s skill deficits in order to develop a plan for remediation. Rarely are parents formally asked by professionals to identify their child’s strengths and positive character traits, either during the early childhood period or as their child with ASD enters school.
Research on the positive character traits of individuals with ASD is congruent with both a contemporary neurodiversity perspective that emphasizes strengths, resilience, and lived experiences (Kapp et al. 2013; Szatmari et al. 2016; Tesfaye et al. 2019) and a strength-based approach to assessment and intervention (Cosden et al. 2006). Cosden and colleagues described several ways that a strength-based approach can contribute to educational planning. First, such an approach can assist in the development of intervention plans that capitalize on a child’s strengths and motivations. Second, by placing an emphasis on the positive aspects of a child’s personality, the outcomes of a strength-based approach may change the attitudes of both parents and educators and result in the development of more fruitful working relationships (Steiner 2011). Third, a strength-based approach encourages educators and other interventionists to establish goals that go beyond “fixing” a child’s deficits to include those aimed at improving overall quality of life. Finally, and perhaps most importantly, a focus on the strengths of children with ASD by parents and professionals may have a lasting impact on children’s self-esteem, developmental health, and resilience (Szatmari et al. 2016).“Best Things”: Parents Describe Their Children with Autism Spectrum Disorder Over Time | SpringerLink
Autism in Care Settings: Managing Sensory Load
I get overwhelmed so easily My anxiety creeps inside of me Makes it hard to breathe What's come over me Feels like I'm somebody else I get overwhelmed so easily My anxiety keeps me silent When I try to speak What's come over me Feels like I'm somebody else I get overwhelmed All of these faces Who don't know what space is And crowds are shut down I'm overstimulated Nobody gets it They say I'm too sensitive I can't listen cause I'm eyeing the exits --Overwhelmed by Royal & the Serpent
I get overwhelmed so easily My anxiety Creeps inside of me Makes it hard to breathe What's come over me? Feels like I'm somebody else I get over, well, well, well Would you look at that? Another person telling me that I should just relax "Calm down and take it easy everything will be okay" Yeah, sure 'cause that's what they all say --Overwhelmed by Ryan Mack
The Double Empathy Problem
- Cameron (2012) uses the term ‘dyspathy’ to highlight how empathy is often blocked or resisted by people.
- Cameron (2012) cites a number of recent studies using fMRI scanning claim to demonstrate a bias towards in-group members in ‘automatic’ empathy.
- Such findings support the earlier social psychological theories of Tajfel (1981), which found that people felt increasing emotional connection to those deemed within their social ‘in-group’, whilst stereotyping ‘outsiders’.
And this is where the neurotypical belief in theory of mind becomes a liability. Not just a liability – a disability.
A belief in theory of mind makes it unnecessary for neurotypicals to engage in real perspective-taking, since they are able, instead, to fall back on projection. Differences that they discover in autistic thinking are dismissed as pathology, not as a failure in the neurotypical’s supposed skill in theory of mind or perspective-taking.
Ironically, constantly confronted with the differences in their own thinking and that of those around them, and needing to function in a world dominated by a different neurotype, autistics are engaged in learning genuine perspective-taking from the cradle on. The perceived failure in that perspective-taking is thus based on the fact that autistics do not rely on and cannot rely on neurological similarities to crib understanding by projecting their own thoughts and feelings onto others.
As such, autistics talk about themselves rather than others, a feature of autistic narrative that has been pathologized as “typically autistic” by researchers like Ute Frith. The fact that much of autistic writing is dedicated to deconstructing neurotypical fallacies about autistic thinking set in the world when they spoke about (or for) us, and to explaining differences in autistic thinking in order to broker mutual understanding remains unremarked upon, as it would have required adequate perspective-taking to have identified this.
Thus, if we were to summarize the effect of neurotypicals sitting in wells that are structured in much the same way, delimited in much the same way, oriented in the same general direction and located in the same geographic location, manifested as an unassailable belief in their natural gift of theory of mind, we would have to conclude that this belief in theory of mind severely impairs neurotypicals’ ability to perceive that there is sky or even the great sea outside the narrow limits of their purview. It also necessarily impacts their cognitive empathy vis-à-vis autistics and, sadly, their affective empathy as well.The belief in a theory of mind is a disability — Semiotic Spectrumite
Monotropism provides a far more comprehensive explanation for autistic cognition than any of its competitors, so it has been good to see it finally starting to get more recognition among psychologists (as in Sue Fletcher-Watson’s keynote talk at the 2018 Autistica conference). In a nutshell, monotropism is the tendency for our interests to pull us in more strongly than most people. It rests on a model of the mind as an ‘interest system’: we are all interested in many things, and our interests help direct our attention. Different interests are salient at different times. In a monotropic mind, fewer interests tend to be aroused at any time, and they attract more of our processing resources, making it harder to deal with things outside of our current attention tunnel.Me and Monotropism: A unified theory of autism | The Psychologist
When focused like this an Autistic person can enter a ‘flow state’ which can bring great joy and satisfaction to the person experiencing it.
However it can make switching between tasks and other transitions difficult.Monotropism
The biggest practical thing to take away from this is the importance of meeting the child, or adult, where they are. This is not an insight unique to the monotropism perspective, but nothing else I’ve seen demonstrates with such clarity why it’s so crucial. Treat interests as something to work with. Recognise what someone’s passionate about and learn how to become part of the attention tunnels which come with monotropic focus, rather than trying to just reach in and pull the person out of the flow states that are so important to us. Never pathologise ‘special interests’, and don’t assume that autistic interests are ‘restricted’ – there are plenty of ways to get us interested in new things, it’s just that they mostly involve taking existing interests and building on them.Me and Monotropism: A unified theory of autism | The Psychologist
Characterization of Special Interests in Autism
Even at the developmental peak, the prevalence of intense interests (i.e., SIs) is not as high in NT preschoolers as is seen in preschoolers with ASD with prevalence estimated to be between 65 and 88% (Klin et al. 2007; Turner-Brown et al. 2011). In contrast to NT youth, high numbers of SIs persist in individuals with ASD.
Interests in NT children are distinguished from SIs among youths with ASD by the intensity of the interest, the type of interest, and inflexibility around the interest (Anthony et al. 2013; Turner-Brown et al. 2011). Sometimes referred to as monotropism (Wood 2019), the tendency to focus intently on a limited range of topics appears to be highly indicative of ASD; researchers have been able to correctly classify 77.5% of individuals as either NT or having ASD using a meas- ure of interest intensity (Anthony et al. 2013; Murray 2018; Murray et al. 2005; Wood 2019). SIs in children with ASD can also be distinguished from interests and hobbies in NT children by the type of interest and the degree of inflexibility around the interests (Turner-Brown et al. 2011). For exam- ple, while an interest in Pokémon may not be unexpected in a NT 8-year-old, an interest in the make and model of eleva- tors would be surprising. Similarly, the same NT 8-year-old who enjoys Pokémon would likely have other interests, be able to engage in conversation with peers around other top- ics, and understand when it would be appropriate to spend time discussing Pokémon. This stands in contrast to the 8-year-old with ASD with a similar interest in Pokémon, who would likely be much less flexible in how they engaged with peers around Pokémon (Turner-Brown et al. 2011).
Diagnostic practice could also be informed by a more in-depth understanding of SIs, as it may increase clinician awareness and lead to easier clinical recognition of different types of SIs. All of these impacts have the potential to affect long-term outcomes for individuals with ASD through more informed identification, diagnosis, and support.
However, understanding what a caregiver perceives unusual appears to be important because there is a significant cor- relation between how unusual a caregiver rates an SI and how much they think it interferes. This finding has direct implications for intervention and psychoeducation.Characterization of Special Interests in Autism Spectrum Disorder: A Brief Review and Pilot Study Using the Special Interests Survey | SpringerLink
Vulnerability and Trauma
Co-morbid mental health conditions such as anxiety and depression are extremely common in autistic adults. Vulnerability to negative life experiences such as victimisation and unemployment may be partially responsible for the develop- ment of these conditions.
Autistic adults were more likely than non-autistic adults to have experienced the majority of the events assessed by the VEQ, demonstrating their significant vulnerability in society. Furthermore, autistic traits, measured using the AQ-10, were associated with experiencing a greater number of negative life experiences in the VEQ in individuals with and without an autism diagnosis.
We found an association between vulnerability experiences and current anxiety symptoms, depression symptoms and life satisfaction in autistic and non-autistic adults. As expected, autistic adults had higher rates of depression and anxiety symptoms Joshi et al., 2013; Mazurek, 2013; Roy et al., 2015, and lower life satisfaction Kirchner et al., 2016; Schmidt et al., 2015 than non-autistic adults. A mediation analysis suggests that these group differences may be partially due to greater vulnerability to negative life experiences in the autistic group. Although we cannot determine the direction of causality from this study, future longitudinal studies should test whether victimisation and other negative life experiences are a cause of high rates of co-morbid anxiety and mood disorders and lower life satisfaction in autistic adults.
Our findings highlight several important understudied areas of vulnerability for autistic adults. First, as well as confirming previous findings that autistic children are often bullied by peers (Cappadocia et al., 2012), our study also found high rates of other types of victimisation. An alarmingly high number of autistic adults reported hav- ing been victimised physically, verbally, emotionally and sexually by adults when they were children. This is in line with a recent study that found that autism diagnosis was associated with parent-reported experience of mal-treatment (Dinkler et al., 2017). We also found that autistic adults who had been in a relationship were more likely to have been sexually, physically, financially and emotionally abused or threatened by a partner compared to non-autistic adults in relationships. We believe this is the first study to report an association between autism and domestic abuse. The lack of previous research in this area may be due to the belief that few autistic people have romantic relationships. However, in our sample of intellectually able autistic adults, 83% had been in a romantic relationship, suggesting that many autistic adults are potentially vulnerable to domestic abuse.
A second understudied area of vulnerability explored in this study is financial hardship and exploitation. High numbers of autistic adults reported financial difficulties, including having nowhere safe to life. These difficulties may result from financial exploitation, as well as unemployment, given almost half of our sample reported being tricked or pressured in to giving someone money or pos- sessions. Studies have shown that parents of autistic children experience financial difficulties (Sharpe & Baker, 2007) and vulnerability to financial victimisation has been reported in adults with intellectual disability (Gillian, Lynn, Kenneth, Michael, & Priscilla, 2017) but this is the first study to show the extent of financial diffi- culties for autistic adults. Our finding that many autistic adults have housing difficulties is in accordance with a recent study that found high levels of autistic traits in a homeless population (Churchard, Ryder, Greenhill, & Mandy, 2019).
In line with previous studies (Taylor et al., 2015), we found evidence of substantial difficulties in employment. Although 90% of our sample had held paid employment, rates of negative experiences such as long-term unemployment and losing jobs were high. Similarly, although 62% had university level qualification, many reported experiences of difficulty within education, for example missing lessons due to anxiety and depression or stress. This demonstrates that individuals that might be considered ‘high-functioning’ are vulnerable to negative events in education and employment that may affect their mental health.
Similarly in line with previous research (Rava et al., 2017), we found that autistic adults are at high risk of being cautioned and possibly arrested by police. However, we did not find that autistic adults were more likely to have been charged with a criminal offence, to hold a criminal record, or to have spent time in prison than non- autistic adults. Again, this may be due to insufficient statistical power to detect differences between groups for these rarer events. Alternatively, it may suggest that autistic individuals are more likely to attract police attention, perhaps due to unusual behaviours, but are not more likely to commit crimes. Either way, this finding highlights the importance of autism awareness training for police (Crane, Maras, Hawken, Mulcahy, & Memon, 2016).The Vulnerability Experiences Quotient (VEQ): A Study of Vulnerability, Mental Health and Life Satisfaction in Autistic Adults
Our website is an act of research-storytelling.
The purpose of storytelling is the propagation of beliefs and emotions.
What is the usefulness of stories if they do nothing to improve our level of understanding of the world we live in?
The limitations of machine learning highlights what is being lost by neglecting model building and by leaving modelling entirely to individual experts working in deep and narrow silos. Model validation and integration has largely been replaced with over-simplified storytelling – the goal has shifted from improving understanding to applying the tools of persuasion.Are you a model builder or a story teller? | Jorn Bettin
Stories are appealing and hold persuasive potential because of their role in cultural transmission is the result of gene-culture co-evolution in tandem with the human capability for symbolic thought and spoken language. In human culture stories are involved in two functions:Are you a model builder or a story teller? | Jorn Bettin
We’d like to transmit some beliefs useful to members of our group in the spirit of collaboration, not persuasion, marketing, and behaviorism.
Storytelling thus is a key element of cultural evolution. Unfortunately cultural evolution fuelled by storytelling is a terribly slow form of learning for societies, even though storytelling is an impressively fast way for transmitting beliefs to other individuals.
Storytelling with the intent of deception enables individuals to reap short-term benefits for themselves to the longer-term detriment of society.
It used to be the case that people were admonished to “not re-invent the wheel”. We now live in an age that spends a lot of time “reinventing the flat tire!”Are you a model builder or a story teller? | Jorn Bettin
We deeply and broadly source our storytelling with supporting evidence.
We do public, team bookmarking, highlighting, and annotation with Raindrop.io. Check out our DEI folder for lots of research.
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Like gods, these mathematical models were opaque, their workings invisible to all but the highest priests in their domain: mathematicians and computer scientists. Their verdicts, even when wrong or harmful, were beyond dispute or appeal. And they tended to punish the poor and the oppressed in our society, while making the rich richer.Weapons of Math Destruction: How Big Data Increases Inequality and Threatens Democracy
What's the problem with my genius? Too attached to ever leave it Silent for the new achievement but What I long to witness is the equal shift Of lifted gadgetry to intuition by Genius giving up its selfish tact And bringing praise of spirit back (Hey) Pay respect upon the debt incurred By non-belief when soul was speaking Called simplistic by a name familiar to Those regulars who think intelligence a competition Missing opportunity to be a real show embarrassment The care is not The care is NOT spewing tools to ax the problem Rather asking have or how they aptly solve themselves
... What if love said: Hear me out a bit before the future comes around ... This isn't anger, no, it's passion so let's live the way we should As if we existed "As If We Existed" by Solillaquists of Sound
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