Neurodiversity 101: time to consider neuroethics and neurofuturism

Neurofuturism is a concept that explores the intersection of neuroscience and future-oriented theories, including technological, sociocultural, and ethical developments as they relate to the human brain and cognitive functions. It's an emerging discipline that speculates about future advancements in neuroscience and how these may transform human capabilities, society, and our understanding of the mind.

Neuroethics is the intersection between neuroscience and ethics.If we look back to the beginning of the 20th Century where most scientists were also eugenicists we have come along way. Psychiatrists at the time (mainly in Germany and some other countries) discussed the societal burden of people with 'mental handicap'. In some countries there was enforced sterilisation!

Today and tomorrow

Today we have the quandary of knowing that some of the traits associated with for example ADHD have a long term impact on educational and employment outcomes. Do read Blandine French and colleagues excellent review paper which demonstrates for example that about 50% have people with ADHD have impact on physical wellbeing and 30% on their mental wellbeing and 44% of people in prison have undiagnosed ADHD which results in lower educational and employment outcomes.

Recently, I have seen a number of papers coming out which show me a real rethink of our conceptualisation of the medical models that we have operated .

Matheiken, Shevonne ; Erden, Meri? ; Krishnadas, Rajeev ; Pinto da Costa, Mariana.BJPsych advances, 2024-02, p.1-5.

The above article however makes an important point that recognising, diagnosing and supporting people with ADHD traits can have real impact.

"ADHD treatment appears to decrease the risk of accidents and injuries in all ages, with medication resulting in more than a 50% reduction in road traffic accidents in men with ADHD ( Chang, Lichtenstein and D'Onofrio2014).Chang, Lichtenstein and D'Onofrio2014).

The week before last in the Guardian, there was an opinion piece from the Science Editor, Ian Sample, about how we are thinking differently today about ADHD and Autism from years gone by. Psychiatrists and Paediatricians with greater engagement with parents, children and adults with lived experience are changing their view of 'conditions' we have squeezed into specific 'medical' dimensions and diagnostic boxes. It is amazing to think that before 2013 we were not 'allowed' to diagnose ADHD AND Autism... and you could only have one or the other... now we talk about ADHD and ASC... being on a continuum...

Is screening in single siloes ethically right?

If ADHD;ASD/C;Developmental Coordination Disorder (DCD);Developmental Language Disorder (DLD);Dyslexia/Dyscalculia and Tic Disorders commonly overlap why would we not screen across ALL neurocognitive traits?

Who decides that ADHD and Autism Spectrum Conditions are more important than the other conditions to provide services for ( e.g. Developmental Coordination Disorder or Developmental Language Disorder)?

Why should we look at some parts of a person but ignore others?

It is the like story of the person who was:

"Searching for your keys under the streetlight while ignoring the shadows where they might actually be hidden."

How as society do we determine who is in greatest need?

The dilemma of designing for equity and long term impact and not just responding to demand.

Ani and colleagues make the point that:

"socio-ecological factors are major determinants of poor mental health across the life span. These factors can lead to health inequalities, which refer to differences in the health of individuals or groups (Kirkbride et?al., 2024). Health inequity “is a specific type of health inequality that denotes an unjust, avoidable, systematic and unnecessary difference in health” (Arcaya, Arcaya, & Subramanian, 2015)".

They make the point that the effects of social determinants are complex and may not be linear i.e. what happens to you and when it happens may vary the outcomes.

Turvey in a conference in 2006 used the phrasing 'meshes of influence' which I quite like. My late friend and colleague David Sugden wrote about ecological frameworks too.

Sadly, the longer an individual is one particular developmental pathway the less likely they will deviate from this pathway.BUT in order to gain support you need to know there is help available, where it is and how to access it.

But inequity can intersect with help seeking behaviours and limit access even when the health resources are available (Alegría, Alvarez, Cheng, & Falgas-Bague,?2023). I was talking with one organisation last week who said they had not considered that they needed screening and materials to be translated into other languages for accessibility. What does this mean? If English isn't your first language the chance of gaining support for e.g. Dyslexia or ADHD is slim to none?

Dr Tudor Hart's in the Lancet from 1971 talked about:

"This inverse care law operates more completely where medical care is most exposed to market forces, and less so where such exposure is reduced."

20 years later in 2021 in the same journal a series of article reflected where we are now and what needs to be done:"health systems must be designed to counter inequity, not further perpetuate it"

A societal and lifetime perspective

Dr Deborah Judge and I posed a pathway supporting children upstream with neurodivergent traits and conditions that utilised and maximise parents and schools.(https://pure.southwales.ac.uk/en/publications/addressing-the-inverse-care-law-in-developmental-coordination-dis) wrote

“We are the sum of all our parts” said Thomas Wolfe

Why do we love to classify?

Classification fills a human need to impose order on nature and find relationships, links and associations that may not be immediately obvious. Over the past fifty years or more we have tried in different ways to conceptualise the ‘messiness’ of individuals. We have used a range of different terms and acronyms such as?Minimal Brain Dysfunction(MBD)?(?"a term almost employed in child psychiatry and developmental paediatrics from the 1950s to the early 1980s"),?DAMP?( Deficit of Attention, Motor and Perception(2003) .. a sort of mix of ADHD and DCD and?ESSENCE?(Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations) (Gillberg et al,2010)?to attempt to do this.

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The?seminal paper?from Thapar, Cooper and Rutter highlighted the real clinical conundrum of ‘the complexity of clinical phenotypes and the importance of the social context’.

In many research papers you will read the term?heterogenous used again and again.Heterogeneous most generally means consisting of different, distinguishable parts or elements but it does not imply causation i.e. what conditions are caused by - genes, environment, and combinations of all ....

Is gaining one diagnosis the answer?

As I write this I can feel the real emotions for parents and adults who are really wanting and seeking a diagnosis of X or Y. Last week I spoke of the challenge of extra time in exams and the inequity of this approach....

In a LinkedIn post asking parents of ND kids what their key challenges were, one of these was access to resources and support. Gaining a medical diagnosis is often the only way of securing additional help in school. Certain diagnoses also result in more support than others.

For many parents it can be a two-edged sword, where they may not necessarily want a diagnosis but recognise that without one their child may not receive support or recognition of their hidden strengths. While intervention is based on a medical model both fear of not gaining a diagnosis AND the need to do so will remain.

I am not denying gaining understanding for challenges and strengths can provide meaning, a sense of relief, a place to find people with a common language and understanding and support for starters. We need that. I am not denying that some children have significant barriers in accessing education either..

The flipside of this is that categorisation can create?stereotypes?such as.... thinking that all people who are autistic( on autism spectrum) are good at computer programming..... or all people who are dyslexic are?creative! It is not true that all people who have a single label for a set of neurodivergent characteristics ( which vary from person to person) are all going to be?good at specific roles. There will be other factors for success including resilience and opportunity that also factor in their success.

Negative stereotypes can reduce the potential for support - we have ironically had a series of newspaper articles and TV programmes about over and self diagnosis of ADHD.

The debate is alive and kicking!!

The future is now

“Life can only be understood backwards; but it must be lived forwards.”

― S?ren Kierkegaard

We need to ensure the pathway for support is equitable and not based alone on those who have a voice to shout the loudest.

What do you think?

Who deserves to be at the front of a long queue for support?

I believe that technology has a potential place in helping us to determine and gain a greater nuanced understanding of the complexity of humans and help to deliver services in a more equitable manner. It is not THE answer ...

BUT.... we do need to ensure the data we are using doesn't have biases built in to them because we have already excluded those from the sampling process.

If we don't consider who we miss we will just repeat the same mistakes of 100 years ago, denying those without a voice the support they really need and deserve and excluding them once again from society.

After 40 years of fighting for this.. I am not ready to give up the fight quite yet for equity and inclusion...

The blog author

I am Amanda Kirby.I am a parent and grandparent to neurodivergent wonderful kids.

I am a mixed bag of experiences and skills and have 25+ years of working in the field of neurodiversity and running a clinical and research team.

I am a medical doctor, G.P, Professor, researcher and have a Ph.D. in the field of neurodiversity;

I am also CEO of Do-IT Solutions a tech-for-good company that delivers web-based screening tools and training that help 1000s' of people deliver person-centered solutions relating to neurodiversity and wellbeing. Currently also Chair of the ADHD Foundation in the UK.

Theo Smith and I wrote the UK award-winning book?Neurodiversity at Work Drive Innovation, Performance, and Productivity with a Neurodiverse Workforce. My 10th book came out called Neurodiversity and Education in 2023 and there is a new one in the pipeline for 2025!

Additional References

1.????Thapar A, Rutter M. Neurodevelopmentmental Disorders. Thapar A, Pine DS, Leckman JF, Scott S, Snowling M, Taylor E, eds.?Rutter’s Child Adolesc Psychiatry. 2015:31-40.

2.????Thapar A, Cooper M, Rutter M. Neurodevelopmental disorders.?Lancet Psychiatry. 2017;4(4):339-346. doi:10.1016/S2215-0366(16)30376-5

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