As we approach Autism Awareness Week, we have been reflecting on the role that lived experience and expertise – specifically, neurodivergence / neurodiversity[i] and autistic lived experience and expertise[ii] – play in making good funding decisions.
As a neurotypical funder (James) and an autistic fundraiser (Jack) we see each other from different sides of the funding divide. This is how the view appears to each of us.
As a funder, I see our sector’s current level of understanding and inclusion of neurodiversity in our work as part of the broader test facing us in relation to our lack of Diversity, Equity and Inclusion (DEI).
The charity and not-for-profit sector is now being challenged to end our diversity deficit and address the inequitable distribution of power we maintain – power held mainly by funders with a particular set of lived experiences. Movements and campaigns such as #CharitySoWhite, #NonGraduateswelcome and the Grant Givers Movement are encouraging all of us in positions of authority to reflect on our personal responsibility to make way and transfer some of the power we hold.
I think there are 6 main reasons why we should apply DEI principles in everything we do:
- Fairness and Engagement: embracing diversity and practising inclusion is part of our commitment to social justice and equity.
- Knowledge and Experience: we can better understand the needs and capabilities of the communities we are trying to reach if we reflect those communities at all levels.
- Efficiency and Impact: different perspectives are more likely to generate new ideas and innovation – helping us to deliver our mission more efficiently and effectively.
- Scale and Sustainability: to find and retain a wide range of supporters and partners to help further our work.
- Legitimacy and Accountability: to help promote public trust in the voluntary and community sector generally – and us as funders in particular.
- Lawfulness: the legal/regulatory context – eg the Equality Act 2010.
There are many more reasons – personal, organisational and systemic – why we don’t.
But some things are changing in our sector. Programmes like 2027, the Jane Slowey Memorial Programme and Young Trustees Movement are helping to bring people from “under-represented” groups into decision making positions in the sector.
Also, the Association of Charitable Foundation’s ‘Stronger Foundations’ programme is developing a set of good practice standards for charitable foundations under 6 key themes – including DEI, Funding Practices and Strategy & Governance. The DEI report touches on the value of diverse thinking in teams and many studies point to the “business case” for neurodiversity in groups and leadership[iii].
But DEI principles aren’t just about HR processes and recruitment decisions. As funders, they should apply in every choice we make in our:
- Funding / Grants
- Services / Activities
Some funders are trying new approaches – either by changing who sits round their board table (eg Blagrave Trust – a youth funder that is replacing its trustees with young people) or by using participatory grantmaking approaches.
I work for a generalist funder that is currently prioritising autism. Our board chose autism as a priority because all of the trustees have experience of the subject (we are a family foundation). But they recognise that the experience they have is particular – it gives them a perspective and some knowledge – but it does not make them or the Foundation experts.
In our first round of grants last year we asked all the applicants how they involved autistic people or their families/carers in the governance and management of their organisation. The answer to this question varied considerably and we are now reviewing how best to incorporate lived experience and expertise in our future grantmaking.
I have learned that, as funders, we shouldn’t be looking for or expecting “mirrors”[iv] in the organisations we choose to support. Organisations that reflect ourselves – employing people who look, think and sound just like us, drawn from our social background and class – comforting us and giving us potentially false assurance (however unconsciously) that we can entrust our funds to that organisation and that we’ll have a nice, straightforward time throughout the funding relationship.
Instead of mirrors we should be looking for “windows” that show us things we wouldn’t otherwise see or understand: people with lived experience and expertise. Organisations which are “of” rather than “for” the communities they seek to serve[v].
As an autistic fundraiser, through my work on a professional basis and my interest in the empowerment of autistic people on a personal level, I am currently witness to increasingly differing, radical schools of thought in the autistic community. The conscious and subconscious tools by which non-autistic people continually have power over the key decisions which impact on autistic people are being uncovered and questioned like never before.
Too, the racist and sexist biases that exist in autism – there is a 3:1 male to female diagnosis rate[vi], while a 2017 study in the United States stated white children are 19% more likely than black children and 65% more likely than Hispanic children to be diagnosed[vii] – are becoming more readily apparent.
One of the key elements by which change can materialise, is for autistic people to have far greater involvement in decisions made which affect their fellow autistics.
It would seemingly be common sense that, in decisions which affect a particular community, members of the community are consulted, their views heard and a key role played by them in the decision-making process. The authentic knowledge and experiences gained by being a member of a disadvantaged community provide a perspective and insight no one else can possess.
It is a unique perspective, not one shared even by parents, carers and loved ones. They have their own views and experiences, which bring another perspective to the table and positively help in decision making. All movements for change require broad churches, diversity and a wide range of views and perspectives, within the basic parameters of behaviour, courtesy and respect.
For context, I am an autistic person, working for a leading autism charity and fortunate enough to be a Manager. In an organisation of 3,000 people, I am one of the most senior autistic members of staff. At an autism charity, we can do much better.
While I am using my own employers as an example in this instance, it is a similar story for other leading autism charities. They are almost entirely run by neurotypicals, with trustees and those in leadership roles being either parents or unconnected to autism, other than in who they work for.
Autism charities have, to varying extents, set up groups of autistic people to help with their work. The National Autistic Society have an Autistic Colleagues Forum, where autistic staff members have quarterly meetings with directors. Schools, projects and services involve autistic members of staff to differing degrees, a shining example being the Women and Girls module, designed by autistic women, which last year won the Training and Journal Award for Best Public Service/Not-For-Profit Programme[viii]. Ambitious About Autism have a Youth Council and Youth Patrons[ix], while Autistica have an Insight Group[x] which performs excellent work, ensuring autism research is reflective of autistic people’s feedback. These are positive steps, but so much more can be done.
While certain decisions require specific expertise and can only be made with confidential information, autistic people need to be far more directly involved in all aspects of charities. This would be fairer and improve the quality and quantity of work delivered. From its basic structures to the services delivered, these developments, on a wider scale, would be helpful:
- Autism-friendly employment procedures, so job descriptions which are written in autism-friendly language and interviews which are adaptable and flexible to the needs of autistic candidates.
- Offices and locations of work which are autism-friendly, not overwhelming from a sensory perspective, in environments where autistic people are better understood and adaptations can be made to suit their requirements.
- Far greater emphasis on hiring autistic people, not just in a tokenistic sense.-Key decisions regarding the stances autism charities take, for example on the false belief vaccines induce autism[xi], Applied Behavioural Analysis (ABA)[xii], Positive Behaviour Support (PBS)[xiii] etc, to be taken in co-ordination with a group of autistic people.
- If necessary, a certain quota of trustees and other key decision-makers to be autistic.
From a purely fundraising perspective, both fundraising and grantmaking in the autism sector would strongly benefit with greater consultation of autistic people’s views. This would result in autistic people being more involved in the design and delivery of projects, more accurate narratives created in proposals, with grants then going to causes which are at the behest of and for autistic people themselves.
It is up to charities to involve autistic people to greater extents in their work, then for that to be reflected in decisions made by grantmakers. This would hugely increase diversity, change the power structure of the funding process for the better and lead to widespread positive change.
Jack and James:
Although we’re on different sides of the funding divide – and experience it from different perspectives – we share some common view points:
- When it comes to making decisions – whether that’s about services offered or how funding is distributed – does power lie in the right place? Specifically, does it lie with the people most directly affected – in particular, people with lived experience and expertise?
- If not, how are each of us (funders and service providers) going to use our positions to shift that power – whether that’s in our governance, staffing, funding or other resources?
Writing in a personal capacity:
James Fitzpatrick: Director – Joseph Levy Foundation
Jack Howes: Philanthropy and Partnerships Manager – National Autistic Society
(featured image – “Slugger’s Paradise” by Conor Harrington)
Resources and Links:
There are some programmes aimed at supporting autistic people into good quality employment – such as Autistica’s DARE programme and the National Autistic Society’s employment support programme. And the Chartered Institute of Personnel and Development has produced a handbook on neurodiversity at work.
[i] Neurodiversity refers to the different ways the brain can work and interpret information. It highlights that people naturally think about things differently. We have different interests and motivations, and are naturally better at some things and poorer at others.
Most people are neurotypical, meaning that the brain functions and processes information in the way society expects. However it is estimated that around 1 in 7 people (more than 15% of people in the UK) are neurodivergent, meaning that the brain functions, learns and processes information differently. Neurodivergence includes Attention Deficit Disorders, Autism, Dyslexia and Dyspraxia.
[ii] Lived experience / lived expertise / experts by experience:
Direct: The experience(s) of people on whom a social issue, or combination of issues has had a direct impact.
Indirect: Someone who has had experience of caring for, supporting or living with an individual with direct experience of a particular social issue, or combination of issues.
Lived Expertise: Knowledge, perspectives, insights, and understanding gathered through lived experience.
Experts by Experience: People who seek to use their lived experience to inform the work of social purpose organisations, to drive and lead social change, and/or to drive their social impact work’
[iii] ‘Neurodiversity as a Competitive Advantage’ – Harvard Business Review
[iv] In 1988 Emily Style of The National SEED Project used the idea of “mirrors” and “windows” to describe the need for people to see others (through windows) not just themselves (in mirrors) in order to form a complete picture of the world and their place in it:
[v] “Of not for”:
Of organisations are those which are controlled and run by the community they are aiming to serve. For organisations are run by others on behalf of the community they seek to serve.
Of perspectives are the direct voices of individuals and particular communities. For perspectives are the voices of others talking about particular communities.
Recognising that Of perspectives are expert perspectives is a key step for funders – and that For perspectives can be valuable but should not be preferenced over the perspectives of those with lived experience.
[xi] In 1998, researcher Andrew Wakefield published a paper in The Lancet, claiming the MMR (Mumps, Measles and Rubella) vaccine led to increased rates of both colitis and autism spectrum disorder. This attracted huge press coverage and led to vaccination rates declining sharply, increases in incidences of mumps and measles which led to serious injuries and even deaths, while to this day it is a strongly held belief, especially in the United States, that vaccines are a cause of autism spectrum disorder.
Subsequent studies by Centres for Disease Control and Prevention, American Academy of Pediatrics, Institute of Medicine of the US National Academy of Sciences, NHS and Cochrane Library have found this claim to be entirely false. It has also been uncovered by investigative journalist Brian Deer of The Times that Wakefield manipulated evidence, having been paid a total of £435,643 by a lawyer to help raise a class action lawsuit against drug companies. Wakefield also applied for a patent for his own vaccine, which supposedly reduced risks of inducing autism, before his research was even published. The Lancet, who published the original article, later retracted it in print and apologised for its publication. https://briandeer.com/mmr/lancet-summary.htm
[xii] Applied Behaviour Analysis is a form of behavioural therapy which seeks to help autistic people read, write, speak and communicate better with the world around them. Plans are developed for children, with rewards given out when they complete each step of their plan eg writing their name, or going to the toilet.While seen as effective for ‘improving’ autistic children’s behaviour, it is viewed critically by many autistic people for seeking to change autistic people into neurotypicals, not respecting who they are while also making them robotic and programmed in their behaviour. It has also been linked to incidents of abuse. Support of ABA is highly contentious.
[xiii] Positive Behaviour Support (PBS) is a method of behavioural therapy, where a person’s behaviour is understood by assessing their environment and interviewing loved ones. Then a plan is developed, putting in place a system of support which improves behaviours and the quality of life for the autistic person and their loved ones. This does not aim to radically change people’s behaviours like ABA, but to practice calming measures and coping strategies to amend behaviours. While not as contentious as ABA, it still has some critics in the autistic community for being too similar and again training people to not be autistic.
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