Open Society

Every day, in every context, people with disabilities get challenged to prove how disabled they are. This constant questioning isolates people with disabilities, increases stress and shame, and can lead directly to verbal or even physical abuse.

The parking lot, with its handicapped spots, can be particularly fraught for people with invisible disabilities. On my Facebook page, one of my readers remarked that, “All I see are looks of disapproval, barely veiled disgust and constant scrutiny. I’d gladly trade my ‘good’ parking space for being able to walk more than 25 yards at a time.” Who knows how many people with invisible disabilities, managing pain, enjoying the concert, were forced to their feet by the glare of Kanye West and the peer pressure of the shouting crowd? Invisible disability also gets people in trouble with the law. When a disabled person doesn’t react the way a law enforcement officer thinks he or she should, violence often follows. But visible disability is no protection. In 2008, as shown in a disturbing video, a Florida deputy didn’t believe a man who had been arrested on a traffic violation was really a quadriplegic, so she dumped him onto the floor to see if he would use his legs out of duress. These are just a few of the ways we constantly demand that people with disabilities prove themselves. We do it because, to the not-disabled, claiming disability seems to have a kind of power. Thanks to the Americans with Disabilities Act, to claim disability is to ask for reasonable accommodation – accessible buildings, more time on tests, audible formats for books, Social Security disability payments, and more. Too many people seem to regard the request to accommodate as a burden and meet such requests with suspicion. The not-disabled exercise their privilege by demanding that people prove their disabilities; then, all too often, proof just generates pity, not understanding or inclusion.

This is just one of the reasons I work so hard on how we portral/represent disability in our culture. People think they know what disabled looks like, but they have no idea. People think they know what “disabled activities” look like, what disabled people can do. So let me set you straight – disabled people, as a group, can do everything. Some can do some things. Some can do other things. Some can do some things some of the time, other things none of the time, and all things most of the time.

Evidence-based practice is the process of identifying the best available evidence to make decisions about practices that should be deployed to support individuals in a given population (McKibbon, 1998, see Vivanti, 2022, for a review in relation to autism). Practices that meet a predefined set of evidentiary criteria are labeled “evidence-based practices” (EBPs1), to promote their adoption by service providers. A tenet of EBP is that the research used to designate EBPs should be rigorous, with the fewest risks of bias possible (Slavin, 2008).

Critics of autism EBP frameworks have argued that they: do not consider the scope of change indexed by outcome measures so that broad, developmental change and narrow, context-bound change are conflated (Sandbank et al., 2021)2; lead to an overestimation of effectiveness by tallying studies that show effects while ignoring gray literature, studies showing null effects, and studies showing iatrogenic effects (Sandbank et al., 2020; Slavin, 2008); and use taxonomies for categorizing practices that confuse practices and specific components of those practices (Ledford et al., 2021). The aim of this editorial is to point out another limitation of autism EBP frameworks, which is that research quality thresholds are much too low for making determinations about which interventions are likely to be efficacious. Low standards result in practices with questionable efficacy being labeled EBPs and promoted for use, and perpetuate the continued production of low-quality autism intervention research.

Crucially, none of these EBP frameworks considers whether intervention researchers measure or report on adverse events, which are unintended negative consequences of interventions that can cause short- or long-term harms. This is problematic because selecting interventions should involve appropriate weighting of the potential for benefit against the potential for harm. The pairing of low standards with insufficient consideration of adverse events that is common to each of these frameworks could mean that researchers routinely recommend interventions that confer little or no benefit, while also inadvertently putting autistic people at risk of harm.

Across these two reviews, we found that adverse events were rarely mentioned (they were mentioned in 7% of studies in our review on young children, and in only 2% of studies in our review on transition-age youth), but there is nevertheless evidence that they do occur (Bottema-Beutel et al., 2021a, 2022).

The conclusions from these two quality reviews starkly contrast with findings from EBP reports. For example, nearly half of the 28 practices designated as “evidence-based” in the most recent NCAEP report were behavioral (i.e. practices that rely on manipulating behavioral antecedents and consequences to shape new behavior).4 Similarly, Smith and Iadarola’s (2015) report concluded that behavioral practices either alone or in combination with developmental practices were “well established,” and the National Autism Center (2015) considered a variety of behaviorally-based interventions to be “established.” However, in Sandbank et al. (2020), we showed that there were too few randomized controlled trials of behavioral interventions to make any conclusions about their efficacy for autistic children. In our review of interventions for transition-age autistic youth (Bottema-Beutel et al., 2022), we found that although 70% of the interventions tested were behaviorally-based, quality concerns prevented us from considering any intervention practice to have sufficient evidence. Because autism EBP frameworks do not distinguish between research that adheres to some quality standards but is still designed with significant risks of bias, and research with minimized risks of bias, the reports may mislead researchers, practitioners, and commissioners of services to conclude that behavioral interventions are better supported by research evidence than other kinds of interventions, given the high number of behavioral strategies labeled as EBPs. In reality, behavioral intervention research has more risks of bias relative to research examining other types of interventions (Sandbank et al., 2020).

This study aimed to investigate whether people scoring higher (compared to lower) on sensory-processing sensitivity respond differently to the work environment. Specifically, based on the literature on sensory-processing sensitivity and the Job Demands-Resources model, we predicted that the three components of sensory-processing sensitivity (i.e. ease of excitation, aesthetic sensitivity and low sensory threshold) amplify the relationship between job demands (i.e. workload and emotional demands) and emotional exhaustion as well as the relationship between job resources (i.e. task autonomy and social support) and helping behaviour. Survey data from 1019 Belgian employees were analysed using structural equation modelling analysis. The results showed that ease of excitation and low sensory threshold amplified the relationship between job demands and emotional exhaustion. Low sensory threshold also strengthened the job resources–helping behaviour relationship. This study offered first evidence on the greater susceptibility among highly sensitive persons to the work environment and demonstrated that the moderating role might differ for the three components of sensory-processing sensitivity. Additionally, it adds sensory-processing sensitivity to the Job Demands-Resources model and highlights the idea that personal factors may act both as a personal vulnerability factor and a personal resource, depending on the nature of the perceived work environment.

Overall, the results of this study suggest that—depending on the nature of the work environment in terms of job demands–resources—SPS can be conceived as a personal vulnerability factor and a personal resource that boosts the energetic and motivational process, as outlined in the JD-R model. While EOE and LST were found to amplify the relationship between job demands (i.e. workload and emotional demands) and emotional exhaustion, only LST amplified the relationship between job resources (i.e. task autonomy and social support) and helping behaviour. This study expands our knowledge by providing evidence of the phenomenon of differential susceptibility of highly sensitive persons to their work environment, and contributes to the JD-R model by adding SPS as a new moderating trait or person-related variable to the model.

SPS has been linked to the phenomenon of differential susceptibility [10, 11]: people with high levels of SPS may react more strongly to both negative and positive stimuli. This implies that SPS may not only relate to a higher vulnerability to negative effects of adversity, but also to a disproportional susceptibility to the beneficial effects of benign situations [10]. Applying this reasoning to the context of work stress, we may expect employees with high levels of SPS to respond more strongly to both negative and positive work characteristics.

The aim of this study was to investigate the principle of differential susceptibility to cues in the work environment [10, 11] of people scoring higher rather than lower on SPS. Based on the literature on SPS [1, 7] and the JD-R model [12, 13, 24], we predicted that SPS acts as a vulnerability factor, amplifying the relationship between job demands and emotional exhaustion. At the same time, it may act as a personal resource increasing the relationship between job resources and helping behaviour. These predictions were investigated for each of the three dimensions of SPS (i.e. EOE, AES and LST) separately, in line with previous recommendations [6, 15]. The results offered first evidence for the greater susceptibility of persons with higher levels of SPS to the work context: EOE and LST amplified the positive relationship between job demands and emotional exhaustion, and LST also amplified the positive relationship between job resources and helping behaviour.

Our stratification methods allowed us to observe a new result: older adults who had relatively average cognitive scores were not impacted by lifestyle factors. By comparison, older adults with very high or very low cognitive scores were highly impacted by lifestyle factors. These findings expand the orchid and dandelion theory to the aging field, regarding the biological sensitivity of individuals to harmful and protective environmental effects. Our discoveries demonstrate the role of individual differences in the aging process and its importance for social prescribing programs.

The possibility of this individual predisposition leads us to our second critical result–the analysis revealed dichotomous findings on individuals’ overall susceptibility to lifestyle factors. Individuals in the intermediate CC were largely resistant to the effects of lifestyle factors, be they detrimental or enriching. By comparison, individuals in the extreme CCs were especially susceptible to these same lifestyle factors. An explanation for this pattern of results may come not from gerontology but from the developmental sciences. Boyce and Ellis (2005) advanced a theory that accounts for biological sensitivities in childhood to various harmful and protective environmental effects and their impact on development into adulthood. They proposed a developmental dichotomy to describe their pediatric patients: the theory of orchids and dandelions. According to this view, orchid individuals are more environment-sensitive: they thrive under ideal conditions but are also more susceptible to deterioration in poor environmental conditions [see Boyce and Ellis (2005) and Ellis et al. (2011)]. In contrast, dandelion individuals are relatively less environment-sensitive: they do not thrive to the same degree as orchid individuals in ideal conditions but are also more resilient to deterioration in poor environmental conditions (Luthar et al., 1993; Masten, 2001). Although concepts of orchid and dandelion individuals were first developed to account for different trajectories in childhood development, the present results suggest that a similar framework may also apply at the other end of the life continuum, with more- and less-environment-sensitive older adults. The extreme cognitive categories may reflect the environment-sensitive qualities of orchid older adults. Conversely, the stability of the central cognitive score category may represent the environment-insensitive qualities of dandelion older adults.

Taken on the whole, our findings offer a new conceptualization of the aging process: the orchid and dandelion aging theory. This new framework will allow researchers to formulate new questions and hypotheses and reinterpret the literature’s critical findings. These discoveries also offer new possibilities to help and support our older populations throughout the aging process. Understanding this distribution of the aging population could help decision-makers offer older adults solutions fitting their needs instead of the current one-size-fits-all policy model. The possibility of having a significant impact on aging health policies and providing substantial evidence for new social prescribing programs is real.

I coined neurodivergent before tumblr was even a thing, like a decade or more ago, because people were using ‘neurodiverse’ and ‘neurodiversity’ to just mean autistic, & possibly LDs. But there’s more, like way more, ways a person can have a different yet fucking perfect dammit brain.Neurodivergent refers to neurologically divergent from typical. That’s ALL.I am multiply neurodivergent: I’m Autistic, epileptic, have PTSD, have  cluster headaches, have a chiari malformation.Neurodivergent just means a brain that diverges.Autistic people. ADHD people. People with learning disabilities. Epileptic people. People with mental illnesses. People with MS or Parkinsons or apraxia or cerebral palsy or dyspraxia or no specific diagnosis but wonky lateralization or something. That is all it means. It is not another damn tool of exclusion. It is specifically a tool of inclusion. If you don’t want to be associated with Those People, then YOU are the one who needs another word. Neurodivergent is for all of us.

Let’s think about ethnic diversity for a moment. This is a concept that should bring people together but has instead reinforced existing prejudices through misuse.^ Ethnic diversity is a property of the whole human race, but all too often white people use both the word “ethnic”, and the word “diverse” to refer exclusively to people of colour. Consider phrases such as “the diversity hire” to describe a non-white person employed in a majority-white company. While at least a dictionary definition of “ethnic” includes reference to being in a culturally-distinct minority, there’s no such excuse for “diverse”. What we see when someone from a majority group (neurotypical people, white people in the UK) uses “diverse” to mean “unusual” is an eradication of the ethnicity or neurotype of the speaker.  They do not class themselves as a part of diversity because they do not recognise the relative unusual-ness of their own identity.  Instead, they think of themselves as “normal” and hence everyone else as “diverse”. The desire to other is strong enough to overcome the fundamental meanings of the words in question. Of course, none of this is meant to instruct individuals how they should identify personally. The language of neurodiversity might not be right for you, or your loved ones.  There is often value in using more specific language – such as “I am dyslexic” or “I have ADHD” – but in any case everyone is entitled to their own preference. If you do choose to use the language of neurodiversity, however, let’s try to get it right and avoid repeating the mistakes that have been made in the past.