Autism – 11 ways we can cultivate positive change

1. Question outdated communication rules

'You don't have to look far to find derogatory descriptions of the communication of autistic people' says Dr Rebecca Woods, researcher at King's College and organiser of the How I Communicate Conference. 'Sadly, it's just a short hop, skip and jump between the notion of communication impairment and cognitive dysfunction. The assumption is that if someone doesn't use speech, if their words are infrequent or produced in unanticipated ways, then their thoughts must also be limited, jumbled and infantile. It's the supposition that non or occasional speech use equates to intellectual disability and "developmental delay" that is responsible for autistic people having poor access to healthcare, being failed by the criminal justice system and misunderstood and excluded from education settings.' 

How to change?  Allow autistic children to access their interests. Woods' school-based study found that all too often, 'communication support would lapse into communication control'. Her study found that when autistic children were able to access their very strong interests in school, it was highly advantageous to their communication, both verbal and non-verbal.

2. Don't pathologise special interest

'Monotropism provides a far more comprehensive explanation for autistic cognition than any of its competitors,' argues autistic writer, Fergus Murray, and, he explains, 'it's finally getting more recognition from psychologists'. Monotropism is the tendency for our interests to pull us in more strongly than most people. 'We are all interested in many things, and our interests help direct our attention,' says Murray, '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.' It's when this way of processing is seen as somehow lacking, that there is a feeling of 'othering'. 

In fact, explains Matt Lowry, licensed psychological practitioner (LPP) and co-host of The Autistic Culture podcast, monotropism allows autistic people to enter flow states more regularly and can therefore be beneficial. (Flow being a state in which someone is so involved in an activity that nothing else seems to matter). Lowry explains that, when autistic people are in monotropic flow, they truly are in a meditative state which can be incredibly healing.

How to change? 'It's simple', argues Murray; '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'.

3. Be supportive around autistic inertia

'Autistic inertia essentially describes the tendency to stay focused on one task, and difficulties related to task switching' explains Sarah Boon, author of Young, Autistic and ADHD. 'Even if somebody wants to start or switch to an activity they enjoy, sometimes they can't, due to autistic inertia and feeling stuck on the task or activity they are currently on. This can also apply to starting the day and getting out of bed in the morning. 

How to change? Ask the autistic person what would be helpful for them in the workplace or educational setting. Perhaps by offering a few minutes to mentally prepare for a change rather than being expected to manage the change on the spot with no warning is helpful. 'How understanding our colleagues are can make a big difference,' says Boon, 'as they may or may not assume everybody can switch between different activities at a moment's notice'.

4. Always question the research method

'Autistic people have traditionally been seen as subjects of research, rather than in the role of researcher,' says Damian E.M Milton, autistic researcher and lecturer at the University of Kent. 'This is slowly, thankfully, beginning to change. Yet autistic researchers are still a distinct minority, and a participatory ethos more generally can often be held back by financial and bureaucratic constraints'.

How to change? 'A more collaborative approach is needed in setting the research agenda as well as the design and development of support strategies and methodologies,' says Milton. 'Participatory research can relate to a wide range of theoretical and methodological approaches, with the aim of ceding power from the researcher to the participants.' Andrea MacLeod, Associate Professor at the University of Birmingham agrees; 'we can shift the notion that large-scale research is the most valuable and see the value and meaning that small-scale research, which can focus in-depth on very specific context, is more meaningful for autistic individuals and their voices.' 

Perhaps even more importantly, a recent study by Sterling University has discovered that the research money spent on studying autism doesn't correlate to what autistic people want from research. Participants' top priority was mental health and wellbeing as well as more focus on non-white autistic populations, parenting and the menopause.

5. Unlearn some of what we have been taught 

'Working by neurodiversity affirmative principles involves a significant amount of unlearning when it comes to what we have previously been taught', say practitioners at The Adult Autism Practice. They argue that we can feel uncomfortable reflecting on previous deficit-based practice, which is typically based on knowledge of autistic experience constructed by the perceived neuromajority, rather than autistic people.'

How to change? 'There are many practical ways you can be an ally', explain the team, including only supporting organisations that claim to support autistic people by checking how many board members are autistic. If you are presenting about autistic people at an event and you are neurotypical, ask if an autistic person could do a better job. When evaluating research or academic articles, deliberately focus on reading material from autistic academics, and ask if policies relating to autistic people have had autistic people involved in developing it. These are just a handful of ways that professionals can advocate for system change and help to bring about societal changes faster.

6. Understand that camouflaging takes its toll

Many autistic people report experiencing camouflaging or masking as an obligation, rather than a choice. But whether it's to avoid bullying, ostracism, or simply a feeling of being different, camouflaging takes its toll. A study by Laura Hull and colleagues in 2017, asked 92 autistic adults to answer several questions about their camouflaging behaviours, and its consequences. They reported that the most consistent response from participants was that camouflaging is simply 'exhausting'. In the study, camouflaging was repeatedly depicted as being mentally, physically, and emotionally tiring, requiring intense attentiveness, self-control, and the continued management of a felt sense of discomfort. 

How to change? 'We can all play our part', explains Professor Francesca Happe. 'Camouflaging is often driven by negative responses, ostracism and bullying by neurotypical people. A greater understanding and appreciation of autistic differences might mean that autistic people could take off the mask'. 

7. Ask if 'social skills' are based only on neurotypical norms 

'Efforts to correct atypical development onto a more neurotypical pathway, or to encourage children to blend in, cannot be considered neurodiversity informed,' explain Professor Sue Fletcher-Watson and Dr Dinah Aitken from Mindroom. They give the example of some schools requiring a child to sign a 'behaviour contract' after a period of exclusion as a pre-condition for returning to school. 'This is an unacceptable approach for a neurodivergent child who isn't 'behaving' but is simply 'being'', they argue. 'Another common example of this in practice involves the teaching of 'social skills' based on neurotypical norms to autistic children. Most egregiously, this is sometimes recommended as a solution when an autistic child is being bullied at school – a devastating neglect of duty of care to the autistic child, when the focus should clearly be on changing the behaviour of the bully.'

How to change? 'Remember that children are not just following their own paths; they are headed to different destinations too. A child who is struggling with handwriting may not need more time to get it right – give them the option to get good at typing instead,' say Aitken and Fletcher-Watson. Dr Rebecca Woods' school-based study found that when autistic children were able to access their very strong interests in school, it was highly advantageous to their communication, both verbal and non-verbal.

8. Put the whole person at the centre of the formulation

'Families looking for mental health support for their neurodivergent child have reported they often experience a significant lack in understanding services and community support,' says Dr Emma Svanberg, Autistic Clinical Psychologist and author of Parenting for Humans. 'I was put off a diagnosis for a long time by well-meaning psychologists who couldn't imagine that I was neurodivergent. I think that says more about the stigma and judgment that still exists about what neurodivergence is – and the implicit understanding that we would rather be neurotypical.'  Clinical Psychologist, Dr Jen Mance agrees that without 'suitable accommodation being made for a person's neurodiversity, they might experience discrimination, exclusion and be at risk for poor mental health outcomes.' 

Professor Kate Tchanturia, Professor in the psychology of eating disorders at King's College London, explains that this has happened in traditional eating disorder units; 'Many traditional, neurotypical ways of supporting eating at in-patient units have left autistic people falling through the net.'  

How to change? Use autism coexistence in a recovery journey. As Tchanturia explains, 'Autism should be respected; it comes with lots of strengths. Eating disorders should be treated: no argument about that. But this leads to the question of how they should be treated. Perhaps it could be in a more friendly environment, through sensory wellbeing workshops, providing people with the opportunity to create soothing strategies and toolboxes… Sometimes people are not even aware of these sensory sensitivities if they are not talked about.'

9. Humanise mental health care

A survey by the National Autistic Society revealed that 76 per cent of autistic adults reached out for mental health support in the previous five years, but it also found that mental health services often fail to provide autistic people access to appropriate treatment resulting in unmet health needs and poorer mental health outcomes. 

Autistic campaigner, author and National Autism Trainer, Alexis Quinn, has lived experience of being sectioned under the Mental Health Act and campaigns for more training across the NHS and beyond. 'Sadly, like me', says Quinn, 'too many autistic people are inappropriately admitted to mental health hospitals where they experience higher levels of restraint, solitary confinement and disproportionate lengths of stay – five years for autistic people compared to 39 days for non-autistic people. 

How to change? Change requires acknowledging the lonely, difficult and often traumatic experiences autistic people incur in many healthcare settings and taking a curious, flexible, and collaborative approach,' says Quinn. 'Having rarely encountered such an approach during my four-year detention, it is clear we need to do things differently.' The National Autism Trainer programme aims to improve the care provided to autistic people whilst in mental health services by offering training to professionals and healthcare workers. 

10. Offer extra support for autistic people experiencing menopause

A recent study by researcher, Christine Jenkins and colleagues, examined how menopause can 'amplify' the effects of autism. Participants described how autistic traits, such as sensory sensitivities can be heightened with menopausal symptoms, resulting in overwhelming emotional and physical challenges. For many, the emotional and sensory intensity of menopause was profoundly overwhelming and disorienting. Participants also reported feeling alienated from others due to their autism, finding it hard to connect with neurotypical women or through traditional support groups. 

How to change? Offering more inclusive and informed menopause support within medical settings and tailoring care around the needs of autistic people, could alleviate much of the isolation and anxiety associated with menopause. 

Similarly, say the researchers, more diverse awareness campaigns could address the knowledge gaps that left many participants feeling unprepared for their symptoms. It's also important to consider such issues from both a lifespan and relationship perspective.

11. Personalise workplace environments

'Only 22 per cent of autistic people in the UK are employed, compared to a disability average of 53 per cent and an abled average of 83 per cent,' says Dr Nancy Doyle, co-director of The Centre for Neurodiversity at Work.

'If we are to create cultures where a wider range of neurotypes can thrive in employment', argues Doyle, 'we need to a different, scalable approach. We need to move beyond the gatekeeping approach of the medical model, beyond the individual approach of the social model and into a biopsychosocial model where workplace environments and workflows are personalised to maximise performance for all employees, rather than the homogenous automatons of the industrial era.'

How to change? 'One development that could be useful', suggests Doyle, 'is the notion of Job Crafting – which suggests that a role can be shaped to form a better fit to the individual leading to better engagement, wellness and performance. The execution of Job Crafting, argues Doyle, 'will involve neuroinclusive measures for assessing the strengths and challenges of all staff, not just those whose rights are legally protected. Job Crafting portends a more personalised approach to performance management, workflow and job design, which is congruent with the replacement of the automaton, heterogeneous workers of the industrial age'.

Illustration above: 'Red nose day', by Michelle Roberts, from Project Art Works. Used as the cover of our special guest edited Jan/Feb 2024 issue, 'Neurodivergence: Change, complexities and challenge'.

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