ION Institute Of Neurodiversity

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24 Feb 2022 10:25 AM | Charlotte Valeur (Administrator)


From cradle to grave, neurodiverse individuals face widespread discrimination.  

Every day the world over, neurodiverse people are told that the way they naturally interact with others is wrong, that they are somehow wrong. With 15% - 20% of the world’s population estimated to be neurodiverse, the fact that this sort of discrimination still exists, affecting such a large number of people, is very troubling. So they are put into misguided and cruel conversion therapies, denied lifesaving treatmentslocked up in health facilities around the country (sometimes indefinitely), face having their children being taken away by social services, are repeatedly failed by the education system and denied jobs because they are supposedly unemployable. 

Is it any wonder neurodiverse groups are overrepresented in the criminal justice system? Those who are incarcerated are routinely mistreated.

Instead of society asking, "how can we make neurodiverse people neurotypical," ION believes that the question needs to become, how can society become more accepting of who we already are.

 

Health and social care 

Neurodiverse groups are significantly more likely to experience health inequalities, including certain physical and mental health conditions, and are less likely and less able to access healthcare services. 

The Covid-19 pandemic highlighted and exacerbated the health inequalities experienced by neurodiverse groups. There has been a higher rate of death from COVID-19 for neurodiverse people and at a younger age than the general population. The pandemic has had a disproportionate impact on people’s mental health and wellbeing, particularly for autistic young people, as the restrictions put in place changed their routines and changed or limited the care and support they received.

Neurodiverse individuals disproportionately suffer from misguided behavioural (and punitive) interventions across the whole of health and social care. This is not only discriminatory, in far too many cases it is abject cruelty. 

For example, there are more than 2,000 neurodiverse people, including those with learning disabilities or autism, classed as inpatients by the NHS, but many of whom are trapped in long-stay hospitals with no or little prospect of ever getting out again. According to the NHS in the UK, as of February 2021, well over half of the inpatients classified as autistic or possessing a learning disability have been legally locked up in hospital for more than one year, with 35% locked up for over five years and a shocking 17% locked up for ten years or more.

This alone is unacceptable, but it gets worse: not all of these individuals require this level of intervention, but they are often (incorrectly) sectioned, unable to leave. One survivor of such a setting, an autistic woman called Alexis Quinn, went on to write her memoirs about being in such a situation in a British mental hospital. She voluntarily sought help for the sake of her mental health, having been diagnosed as autistic and finding it difficult to simultaneously cope with the birth of her child and the death of her brother whilst living abroad. At the hospital, she was sectioned, unable to leave, and routinely received treatment that did not reflect her needs because her autism was not understood and because the environment in which she found herself was inappropriate. Having escaped the mental institution, she fled the UK and within 6 weeks of building an environment she could thrive in, she had secured full-time work and her life. 

The UK government currently website currently states that it plans, starting this year, in 2022, “to improve how people with a learning disability and autistic people are treated in law and reduce the reliance on specialist inpatient services for these groups. We want everyone to have the opportunity to live a full and rewarding life in their communities and an end to perpetuated detentions without appropriate therapeutic inputs.” 

 

Research on neurodiverse groups

Historically, majority research has not centred neurodiverse voices within the structure or development of studies. This needs to change.  

As it was eloquently put by Anna Stenning & Hanna Bertilsdotter Rosqvist in their recent paper (2021): 

“If we are able to acknowledge our own subjectivity – as the neurodivergent are so often required to do – we may begin the process of negotiating representation for many different neurotypes. We don’t yet know what epistemic or methodological rules will help us to get here. We commit to working across neurotypes, working with rather than ‘on’ other people. This means decolonializing neurodivergence research and the hierarchies between neurotypes. This working with is therefore not the same as researching on or for, but also not the same as the “with” in which the neurodivergent becomes a strawman in an otherwise neurotypical led and defined research (Woods et al. 2018) This means recognising and questioning colonializing pasts and practices within research and practice, formulating other perspectives on knowledge and knowledge production and challenging dominant perspectives on research ethics. There are many examples of this in our edited book and elsewhere. We hope that this will contribute to the broader project of centralizing marginality, marginalising the centre which has been the project of feminist and postcolonial research for the past decades and which is also central to disability studies.” 

As one example demonstrating the point comes in the form of the recent controversy in 2021 surrounding Cambridge University's research. The furore was over the attempted gathering of genetic information from 10,000 autistic people as part of a wider study. 

The long-term consequences of such research weren’t considered, including sensible questions over the possible future (mis)uses of the genetic information gathered and the role it could play in any future eugenics research. 

ION aims to collaborate with the academic community to ensure that neurodiverse viewpoints are included when they are the subject of research in any study, as well as consult with educational institutions on the long and short impact of their research on the Neurodiverse community. 

 

Education

Albert Einstein once said, "everybody is a genius, but if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid." This could also describe the experience of neurodiverse children within the education system, which fails to promote actual learning for the neurodiverse due to both a shortage of funding and understanding around neurodiverse conditions. 

For example, taught social frameworks fail to appreciate other types of social frameworks which can greatly benefit the neurodiverse, such as parallel play. Parallel play is a form of play in which children play adjacent to each other, but do not try to influence one another's behaviour. Children usually play alone during parallel play but are interested in what other children are doing. 

ION will push for a more inclusive education system which incorporates methods which enable learning development for both neurodiverse and neuro typical children. Additionally, awareness to issues which neurodiverse children and adults face to create a wider understanding.

 

Workplace

It isn’t just the education system which needs an overhaul. The way in which workplaces are set up puts neurodiverse workers at a disadvantage.  

Although awareness around neurodiversity is increasing amongst employers, research shows that the vast majority of companies are not keeping pace. For example, according to the UK National Autistic Society, an estimated less than 20% are in full-time paid employment in the UK, despite 77% saying they are willing and able to work. This is compared with 47% of disabled people and 80% of non-disabled people. Dyslexic people are up to five times more likely to be unemployed, and dyslexic thinkers make up to 40% of the unemployed population. With 10% to 16% of the population affected by dyslexia, even if we take the lowest figure, this equates to around 7.3 million people in the UK and globally this is 700 million people, according to the British Dyslexia Association. 

Many neurodiverse individuals don’t make it through hiring rounds because they may struggle with social skills, have a nervous tic, or engage in behaviour which may come across as different. However, they may also be highly educated, hold multiple degrees, have above-average abilities when it comes to certain tasks, or certain disciplines, or have above average levels of concentration. They could also be the perfect fit for an organisation looking to solve complex issues, but these individuals are too often told they’re “not the right cultural fit,” due to being different.

Many neurodiverse people in employment, are not in mainstream employment: over a third of entrepreneurs identify themselves as dyslexic, which shows that employers are failing to attract or retain a significant pool of ambitious and success-driven, neurodiverse talent, according to research.

Even where neurodiverse individuals are in mainstream employment, many tend to keep their neurodiversity a secret, worried about discrimination from their employer, colleagues, or both. Feeling unsafe to disclose who you are, is a signal an institutionalized, systemic problem persists with the way neurodiversity is treated in the workplace and wider society.

With up to 20% of the world’s population being neurodiverse, employers most likely already have neurodiverse employees or are very likely to in the future. Discrimination is not only social injustice but is commercially short-sighted: it limits the workforce to one type of world viewpoint whilst trying to meet the complex challenges of the new decade. However, it is encouraging to see the increasing awareness of the benefits of neurodiverse inclusion in the workforce, with Microsoft, JPMorgan Chase, EY, BT, Google, SAP, BT, Ford, and GCHQ amongst large organisations with or developing neurodiversity at work initiatives. 

These companies can expect to see direct benefits including different perspectives and modes of thought, hyper-focus, attention to detail, directness and honesty, creativity, innovation, and more. In fact, 78% of global HR and business leaders believe diversity and inclusion bring a competitive advantage, according to Deloitte’s Millennial Survey (2018). We see organisations reaping these benefits in practice already. In the UK,  GCHQ’s recent recruitment drive has called specifically for people who are dyslexic to apply, with the employer citing the different perspective which allows dyslexic people to think differently and spot patterns that others simply don’t.

One of the greatest barriers to fairer treatment in the workplace for neurodiverse groups is that neurodiversity isn’t yet included in many companies’ diversity and inclusion strategies, with the majority addressing other forms of diversity such as gender or ethnicity. A CIPD poll found that 72% of HR professionals in the UK stated neurodiversity wasn’t considered a part of their organization’s people management practices (GMB Union, 2018). LinkedIn’s Workforce Diversity Report (2018) revealed a similar trend, with less than a third of companies considering any disability in their diversity and inclusion programs.

The neurodiverse community is talented, ambitious and an underutilized resource within our workforce. A change is drastically needed within our industries and  society. This includes the justice system.  

 

Prison system

Research conducted to date on neurodiverse individuals in the various prison systems around the world have three main findings. First, neurodiverse groups are over-represented in the prison system, compared to the general prison population. Second, they often have “hidden differences” when compared to their neurotypical counterparts and therefore experience a lack of appropriate response towards them by prison staff. Finally, the lived experience is particularly difficult for the neurodiverse when compared to the general prison population.

One research team (Young, S. et al, 2018), found 32% of the prison population in their study were neurodiverse, with ADHD (25%) representing the highest form of neurodiversity. In fact, it is thought that ADHD is particularly common amongst prison populations, with one Swedish research team finding prevalence rates as high as 40% in their study.

Those with neurodiversity, but perhaps particularly ADHD, have a bad time in a prison environment, as the difficult difficulties around remaining focused and attentive during, for example, probation interviewing/work can prove problematic and, for those undiagnosed, may result in incorrect interpretations in terms of engagement and attitude, making them more vulnerable within the system (Usher et al., 2013). For example, functional impairments can impact the individual’s ability to follow the basic rules of the court and probation (Colwell et al., 2012).

These findings suggest that there is a greater need for actors within the criminal justice system such as the police, prison staff, and probation officers, to be more empirically aware of neurodiverse groups’ differences, and be able to respond in a manner that is guided by evidence and best practice.

To this end ION is organising an event which you can sign up to here Neurodiversity and the legal system  


Conclusions

Challenging the status quo in each of these areas will be hard work and may not be achieved in one lifetime. ION is bringing together a community of people who will to fight for their right to prosperity and equal treatment in the years to come.

We have a strong sense of urgency for change and believe that many people's voices together create a powerful coalition to make change happen faster.

Our vision is to be present in 100 countries with 1 million members globally who stand together to effect positive change for the neurodiverse community.

We believe that bringing us all together is one of ION’s greatest strengths, and will be key in the fight against the institutional discrimination neurodiverse groups face throughout their lives.