Back in August 2019 I invited several autistic and otherwise neurodivergent people, their families and friends and our allies to meet with me. I wanted to know if they thought there was a need to establish an organisation that could help neurodivergent people in Calderdale and surrounding areas.
Their response was a unanimous and decisive Yes! The second meeting made it official, on 2nd September 2019 the Society for Neurodiversity (S4Nd) was founded as a Community Group. We nominated and elected our trustees board, agreed I would hold the voluntary and unpaid role of CEO and we voted in agreement of our constitution.
We agreed that if our earnings exceed £5000, we would make an application to the Charity Commission to change our legal status to an Association Charitable Incorporated Organisation. That happened just over 12 months later. On 16th October 2020, the Charity Commission accepted our application and S4Nd is now a registered charity.
S4Nd is a digital organisation, people become members when they sign up to join on our website. Membership enables people to access a safe community area. S4Nd had 65 members when we became a CIO. Just 15 months later there are nearly 500 members. Our trustees board initially had three members, now there are seven. I remain the voluntary and unpaid CEO for S4Nd.
Being responsible for the safety and wellbeing of such a large number of people bestows on the management board a great responsibility and sometimes that is overwhelming and all of us have had the need to take time away from S4Nd.
I am chronically timeblind and I’m a perfectionist, this means I grossly underestimate how long it will take to complete tasks. As a consequence, I over commit and inevitably find myself working longer hours to compensate. Every 6-8 weeks I burnout.
In May last year, I started new medication that changed me, these changes are largely positive, but an increase in energy made me believe I could do more and added more commitments to my calendar, including helping people on a one-to-one and group basis. By October, I was helping 17 people on a one-to-one basis, whilst also trying to manage my other professional and personal commitments, my family had a growing need for my time.
The trustees recognised I had taken on too much. They sent out a statement to members saying that with immediate effect I would be taking a break and S4Nd was not in a position to help people on an individual basis because we didn’t have the resources. My desire to create an organisation like S4Nd was born out of my near pathological desire to help people. I was heartbroken of course, I believed I had let people down, but what I had created was unsustainable.
The medication had given me energy and time, enabling me to work longer hours but it had also interfered with my ability to recognise the signs that I needed to take a break. Prior to this I had accepted and embraced what I thought was an inherent all or nothing cycle. I was aware of patterns of behaviour and thoughts that would signal burnout. I would plan short breaks to give me enough time to rest and recover. These were welcome breaks that also gave me time to reflect and learn.
In December, I broke. I had not found a way to deal with having to stay quiet and saying no to people that needed my help. My heartbreak had developed into depression and I burnt out again. My GP signed me off work, it took me longer to recover this time, thus more time to reflect. I learned that my behaviour was not a natural, it was a coping strategy I had adopted to deal with constant deadline driven demands from society and its actors and the high expectations I have of myself. I am trying to change.
Presently, I am on a phased return to work. The trustees and I collectively decided to take time to prioritise and plan S4Nd’s next steps. For now, this means we have decided to suspend anything that I host to enable us to create better infrastructure to support all S4Nd’s members and volunteers. We are working on developing:
- The website and community area.
- S4Nd’s communications strategy.
- An event that supports S4Nd’s Patient Choice campaign.
- Resources to help members access their right to choice in neurodevelopmental diagnostic services.
- S4Nd’s first AGM as a CIO.
- A programme that will help members applying for Personal Independence Payments.
- A volunteer co-ordinator role (funding dependent).
- Volunteer roles.
- A programme of development and training for members and volunteers.
- Members hosting Moots and themed activities such as crafts and debating societies.
- S4Nd’s YouTube Channel.
It is important to acknowledge what S4Nd has achieved since it was founded. Together S4Nd and its members have:
- Successfully delivered the Keeping Neurodivergent People Connected project.
- Enthusiastically signed up to Move the Calderdale Way and raised over £600 for S4Nd.
- Helped members understand and access their legal right to choose a service provider for neurodevelopmental diagnostic assessments, by developing a guide which was approved by a renowned Barrister (co-author of NHS Law and Practice).
- Developed an ongoing campaign based on people’s experiences accessing neurodevelopmental diagnostic assessments.
- Grown a network that enables S4Nd to work with and influence organisations when developing processes and making policies.
- Created an online space that enables us to connect through shared interests (special thanks to Mark).
- Created a welcoming space that enables people to be themselves.
- Delivered Zoom hosted social, creative and therapeutic activities for members to teach, learn, support one another and have fun.
- Nominated and been awarded Breakthrough Charity of the Year 2020 and Best New Charity 2021.
S4Nd’s mission is to build a space that removes the barriers that exist for our community in society. A community that works together to help disabled people by giving members resources that saves them time, freeing up energy and empowering people to have more control over their health and wellbeing. Also, supporting people to develop their strengths and giving opportunities to showcase their talent.
I clearly see the talent that exists in our community and I have painfully witnessed both first-hand and through observation what society’s actors and environments take from us and the arbitrary barriers that prevent us from self-actualising.
S4Nd is directly and passionately opposed to exclusion. S4Nd doesn’t want to ask society to include us because, in asking, our time and energy is taken from us. We have a right to be included but S4Nd will not ask, it will create. Together we will create a society that removes the barriers which prevents the members of our community from reaching their full potential. To be directly and passionately opposed to exclusion we will endeavour to ensure that no-one is excluded.
Our members are intersectional and part of other excluded communities. S4Nd will ask its members to work together collaboratively with these communities to include them in the space we create. Our members will act upon this aim according to their ability and according to their needs.
S4Nd will ask its members to act according to their abilities and needs in order to build a caring, nurturing and empathic community by giving people the resources and means to enable them to save time and energy which will lead to better health and wellbeing. S4Nd wants to give its members access to the ‘Good life’.
Every time I interact with members of our community, I see people that are curious, many are empathetic and often they don’t see that but it is obvious from their desire for justice. Justice for themselves and others, for animals and the environment. Everyone I meet seems to have an intrinsic motivation to learn, problem-solve, collaborate, connect, belong, persevere, achieve high standards, act ethically and morally, to not cause harm or offence, to persevere and practice and to become efficient and to make things better. I strongly believe that by giving members more “spoons” people can make the most of the opportunities S4Nd will have to offer and help us to achieve our aim to change the world.
I invite you to be involved in building and creating this new world, we have an opportunity now for you, but first let me summarise what I am trying to say. I will use S4Nd’s nature theme to explain. Our organisation is a fledgling. This is new to us and we are learning what is expected from us and there is a lot to learn. Despite appearances we are a tiny organisation, we don’t have employees, just enthusiastic and passionate volunteers. Sometimes, we are funded to access specialist help in areas where we lack knowledge and/or experience.
We need to understand and comply with any statutory and legal obligations. We are carving out our mission, aims, values and principles by learning what it is that our members want and need. It’s a lot to learn, what are our legal and statutory obligations, what to do is new and we are learning. We are making plans and starting to build our NEST (Nurture, Empower, Support, Together), that is to say our community without barriers.
Thank you for creating a space for me that enables me to be honest and authentic.