About Us
We are an advocacy by neurodivergent people for neurodivergent people. We came together as non profit voluntary group to build a self-advocacy and peer to peer support network dedicated to empowering autistic adults, harnessing our talents. overcoming our barriers and achieving equality in employment, relationship, and wellbeing.
We want to transform the attitude to autism in society and develop services that are relevant and helpful to us.
Our motto is: ‘Nothing about us without us’
Our Values
Forgiving, Supportive, Acting with integrity, Trust, Equality, Dignity, Ambition for autistic people
- The support and enablement of Neurodivergent People to lead healthy and fulfilling lives, achieve their life goals and realise their potential in order to achieve equality and fully contribute to society.
- By Neurodivergent People we mean people on the autistic spectrum, who may also have ADHD, Dyslexia, Dyspraxia and co-occurring conditions such as epilepsy, OCD, Bipolar etc…
- Autistic Spectrum Disorder includes Autism, Asperger’s, PDD-NOA
- We will provide an online platform for those who want to find detailed information about Autism Spectrum Condition and Neurodiversity. This interactive platform will be organised by those on the spectrum who can offer advice and guidance based on their own experiences and understanding autism from within.
- We are an autistic-led group that promotes (self)advocacy by neurodivergent people for neurodivergent people. We will enable Neurodivergent people to support each other, provide peer to peer support and coaching right from the suspicion of the diagnosis, throughout the diagnosis process and beyond.
- We will support Neurodivergent people to achieve their life goals such as obtaining qualifications, achieving and retaining fulfilling employment, forming and raising a family and aging happily by providing tailored peer to peer advice and support based on our lived experience and inside knowledge of our condition.
- Too often those classed as with so called ‘low level needs’ only receive support at crisis point. We will support and enable all neurodivergent people who need specific tailored support in order to successfully achieve their potential.
- We will advocate for autism acceptance as part of human diversity, achieving equality for neurodivergent people in all aspects of human endeavour they choose.
- We will operate an open national Neurodivergent Self Advocacy organisation that will provide a forum (“a place to discuss”), with an open process for autistic adults to discuss priorities and needs. We will be the voice of adults on the spectrum, at a national scale that is distinct from the voice of professionals working in autism and organisations set up to provide support for families with children on the spectrum. This provides us with the authority to discuss autistic needs from a Neurodivergent perspective for which current structures have no capacity.
- We will provide a space for autistic people to contribute, to get involved, to use the wealth of skill and knowledge autistic people have, utilise their lived experience and inside knowledge of autism. Autistic people can do a lot to support each other and basically themselves.
- Utilising the talents and knowledge of autistic people to support themselves and each other.
- For autistic adults currently ignored or ineligible for services, by autistic people, peer to peer.
- We catch those that fall through the gap, adults that are undiagnosed, late diagnosed, the misdiagnosed.
- We aim to support autistic people based on their individual needs in overcoming the specific barriers they face in their wellbeing, employment, family life and participation in the community.
- We are the experts on our condition, we know the system because we have direct experience of it. Understanding autism from within provides the right perspective to shape and channel support.
- Autistic people speaking for themselves, not through ‘experts’ or NT family members.
- National scale and a forum based organisation enables to achieve scale to meet the broadest possible range of needs and harness the contributions of autistic people who are currently not served by available services to improve the input of autistic people into the understanding of their needs and ways to meet them.
- Shifting focus from seeing autistic people as being receivers of care and benefits and being primarily a cost to society, towards enabling de-stigmatisation and acceptance of autism, enabling autistic people to be in gainful employment, function independently and participate fully in all aspects of life as they choose.
Autistic people experience
- Staggeringly lower life expectancy (53.9 years vs 70.2 in general population).
- High suicide rate [2] and high suicide risk. 40% of adults who attempted suicide self-reported high autistic traits. 41% of autistic children showed signs of suicide ideation.
- High rate of mental health problems.
- Only 16% of autistic people are employed while 77% want to work.
- Autistic adults are vulnerable to many types of negative life experience, including employment difficulties, financial hardship, domestic abuse and ‘mate-crime’. Individuals with the highest number of negative life experiences also experienced the highest number of current anxiety and depression symptoms and the lowest current life satisfaction.
- Financial hardship: 45% of autistic adults said they had had a period of life without enough money to meet basic needs, compared to 25% of the non-autistic adults.
- Domestic abuse: 20% of autistic adults that had been in a relationship had been sexual abused by their partner, compared to 9% of the non-autistic adults, and ‘mate-crime’: 70% said they had been bullied by someone they considered to be a friend, compared to 31% of the non-autistic adults.
- 78% of autistic adults experienced sexually abuse, – an almost three-fold increased risk; sexual perpetrators actively target ND individuals.
- Lower quality of life (QoL) than the general population in the UK.
- Being in a relationship and receiving support, being employed, and having someone to talk to, someone to do things with are positive predictors of Qol
- Better wellbeing in adults correlate with positive autism identity, understanding and recognition of contribution to society, perceived belonging, perceived social support and autism-led spaces, i.e. being amongst autistic people.
- Alternatively, interventions aimed at neurotypical populations that promote ASD acceptance may lead to increased QoL that is not dependent on autistic people changing who they are.
- “This research highlights the challenges that autistic adults face in our society. With the right support many of these events are preventable”, said Sarah Griffiths.
We are a group that came together on the autism related forum to form this voluntary not for profit organisation.
Maria
Chair and Managing Director, MPhil, MBA, PG Cert Autism. She has 5 years experience of developing and delivering NDSA research and lived experience informed services. In that capacity she won the Innovate UK Women In Innovation Award. I entered the autism space by advocating and dealing with my children’s diagnosis and SEN provisions at school. However soon I realised that autism, or then Asperger, was the name for what was happening to me all my life. I am an MBA qualified chemical engineer by training and worked in blue chip companies in new product development and marketing. I have 12 years’ experience of advocacy and 8 years’ experience of advising people on a popular forum for parents. Watching my girls, I know building positive autism identity is hugely important. I came across some demeaning and dehumanising conversations about autistic people and realised that equality is not a forgone conclusion. We need to work for it for us and for the sake of our children. So I joined with others to start this voluntary organisation.
Catriona
Catriona’s, OBE, PhD, work is focused on community engagement, participatory action research, equality, diversity and inclusion, and Human Rights. Her PhD focussed on the lived experiences of autistic girls, at a time when they were entirely absent from research and policy discussions after which she founded charity, SWAN: Scottish Women’s Autism Network, with a small group of volunteers. SWAN is focused on building on the knowledge base, and empowering the individual through valuing lived experience expertise, sharing peer-support, and promoting a positive self- narrative.
Andy
Andy is our Finance Director and step-father to autistic children. He is embedding sound financial management processes to support the efficient delivery of services. As a Chartered Accountant he has many years of audit and project experience in mostly financial services companies as well as advising Boards and Management teams on their approach to strategy, governance and risk management. He is using his experience of strategy, governance to further develop the NDSA and provide support.
Richard
Our IT director Richard is an expert by experience and a technology leader responsible for the development and implementation of technology strategy to meet current and future needs. He ensures organisations realise measurable benefits and value from IT change. He has over 20 years of experience working at IBM, Capgemini, PwC and Deloitte and providing services to FTSE100, Public Sector and not for profit organisations. Richard oversees our ICT and information security strategy and execution and manages the ICT contractors and volunteers.
Our directors and employees are autistic and multineurodivergent. Together we have experience of very broad range of issues affecting autistic people, from parenting neurodivergent children to dealing with trauma.
Our experts by experience steering group
Simon
I am an electrical engineer. I moderate a professional forum and manage my own electronics business. I hope to see a change in attitude towards “autistic” people and have a decent online platform to use. I believe we should be pushing the idea that there is a diversity in society. There is sliding scale from NT to Autistic. The cut-off point between NT and Autistic is impossible to define, we are proof of that in trying to help those that miss out on a diagnosis. We should be pushing for an understanding that we are not all the same and there should be more tolerance in society.
Alex
Alex is an MBA qualified, international finance executive with a proven track record over the last 20+ years working across all aspects of operational finance, restructuring and transformation, P&L turnarounds as well as managing complex international controllership, audit and risk mitigation activities. During this time Alex also held several international board positions most recently in the UK as a trustee of his company’s pension plan.
Spencer
Volunteer financial auditor and advisor, chartered management accountant with 16 years’ experience in a variety of sectors. Before he was analyst at UBS, PwC and GE Capital. Currently works as a finance manager and a strategy consultant for a couple of firms
Digby
BSc Electronic, Computer and Systems Engineering with a career in Aircraft Systems and hobbies with hardware/Software on Windows/Mac machines. Diagnosed in Sept 2019 at 51 with Asperger’s. Learning lots about the journey as an adult whilst finding the gaps in the world view of Neuro-Divergent people.
Quinn
I work in the optical industry. Been doing it 30 years. I’m the big-data guy at the company I work for these days but I’ve done loads of different jobs in the business. I am also Autistamatic and rum my own autistic vlog.
Ryan
I have skills in website design, art, running a business, social media, marketing strategy. I hope the world would understand autistic people better and do things in a logical order.
Our advisory group offers valuable expertise, advice, and guidance on our initiatives, ensuring they are effective and impactful. They provide critical feedback to refine our strategies and help us navigate complex challenges. Their support is essential in shaping the success of our programs.
Professor Nicola Martin
Head of Research, Higher Degrees and Student Experience at London South Bank University
Professor Nicola Martin is currently Interim Director of LSBU’s Research Centre for Social Justice and Global Responsibility. She has an extensive leadership background in equality in higher education and disability/autism research and is a founder member of The Participatory Autism Research Collective (PARC). Nicola leads the MA Autism/Education and EdD at LSBU as well as the Critical Autism and Disability Studies Research Group. Nicola is a member of the Westminster Autism Commission and Principal Investigator on two current research projects focusing on older autistic people’s wellbeing and access to annual health checks. She delivers research-informed accredited mentor training aimed at mentoring autistic adults.
Nicola has 35 years’ experience in education working with disabled pupils and students from nursery age to adults in FE and HE and an international research profile in the field. Her research interests are informed by emancipatory principles and include: universal design for inclusive learning, multi-agency collaboration, equality and diversity, critical disability/autism studies, mentoring and understanding bereaved parents and siblings.
Nicola is also a Visiting Fellow at Cambridge and Sheffield Hallam Universities, a National Teaching Fellow and a Fellow of the RSA.
Professor (Hon.) Dr Geraldine Akerman
Consultant Forensic Psychologist, Clinical Lead for Psychological Pathway
PhD C.Psychol (Foren). HCPC Registered Psychologist EuroPsy.
I worked for the prison service since 1999 on cognitive behaviour programmes and in a democratic therapeutic community. I now work for Oxford Health NHS Trust at HMP Grendon and Springhill, Bullingdon and Huntercombe as Clinical Lead for Psychological Pathway. I am a reviewer for Forensic Update and have completed a PhD, the Development and validation of a psychometric measure of current sexual interest with the University of a Birmingham. I am also a Chartered Forensic and EuroPsych and HCPC registered Psychologist. Proud Trustee for the Safer Living Foundation and TC Specialist with the Royal College of Psychiatrists.
Dr Oliver George Downing
Commissioner Specialising in Autism, Neurodivergence/Neurodiversity and Learning Disabilities (Âû)
I am an accomplished academic researcher and teacher (2013-present) with previous experience working in legal services (2007-2013) and hospitality (2005-2008).
With five years’ experience as a University Teacher in the University of Liverpool’s Department of Philosophy, I have extensive experience of designing and delivering academic curricula, and assessing student assignments across a broad range of philosophy modules, such as: business ethics; critical, analytical and creative thinking; and, logic.
My doctoral research, for instance, exploited my ability to combine creative and systematic approaches by applying theoretical concepts from one area of philosophy to solve ostensibly intractable problems in another area of philosophy to innovative effect. In my role as General Editor of the Journal of Badiou Studies; I gained experience of budgeting, client liaison, and project management whilst chairing the organising committee of two academic conferences; and, developed my auditing and consulting skills in my role as an External Review Panellist for Reaccreditation of Postgraduate Study Programmes for Croatia’s Agency for Science and Higher Education.
As a freelance neurodivergent associate, I act as an expert by experience on Creased Puddle’s neurodiversity training on an ad hoc basis. Each assignment is different, but the primary responsibilities usually include: presenting on neurodiversity, what it’s like to be neurodivergent and my personal experience as a neurodivergent person; acting as a mock candidate in a simulated job interview and provide trainees with feedback on how their performance in interviewing neurodivergent candidates; and/or, attending targeted stages of client companies’ recruitment processes (e.g., assessment events and interviews, etc.) and providing feedback.
As the Integrated Care Board’s (ICB) subject matter expert for autism and neurodiversity, my key responsibilities sat within Joined Up Care Derbyshire’s (JUCD) multi-agency strategic commissioning function for learning disabilities and autism (LD&A). Principally, as the lead commissioner for JUCD’s autism community of practice (COP), I worked with NHS and local authority commissioners, and representatives of NHS provider trusts and local voluntary, community and social enterprise sector (VCSE) to ensure strategic commissioning is as joined up, efficient and effective as possible throughout Derby and Derbyshire.
Jacqueline Moran
Independent career management consultant and cultural mediator
Active in the field of international employability for groups and individuals from the public, education, and third sector. She has developed a particular forte in working with disadvantaged groups.
Jacky has completed her MA in Career Guidance from Canterbury Christ Church University. Her other qualifications include an MSc in Social Psychology from the London School of Economics and QCG Level 7 in Career Guidance Practice in addition to a BSc in Psychology from the University of Puerto Rico.
A registered career development professional member of the Career Development Institute (CDI). Jacky is also a member of the British Psychological Society (BPS), The National Autistic Society (NAS), Disabilities Rights UK, The Association for Child, and Adolescent Mental Health (ACAMH).
She has been a Mentor and Non-managerial Supervisor for Neurodiverse Self Advocacy (NDSA) since 2021.
Further information:
Alicja Nocon
Autistic coach and mentor
Alicja (‘A-lee-tsya’) is a late-diagnosed autistic coach and mentor. Having gone through her own journey of self-discovery and self-acceptance after receiving her autism diagnosis in 2020 when she was in her 30s, she now helps other late diagnosed/self-identified neurodivergent professionals make sense of who they are and how they want to be, so they can thrive and not just survive. Alicja’s previous background is in the financial services sector, where she worked for 10 years for several organisations.
Alicja’s professional qualifications include an accreditation with the European Mentoring and Coaching Council at the Senior Practitioner level and a Master’s degree in Applied Positive Psychology and Coaching Psychology from the University of East London (Distinction). She is currently working towards a Professional Certificate of Advanced Study in Coaching Supervision at Oxford Brookes University.
Alicja is an active member of the autistic community. She regularly participates at Autscape, the autistic conference, and shares her reflections in her blog. Alicja’s research on character strengths of autistic adults in the UK has been published in a peer-reviewed academic journal.
1. What is the cost of participating?
Our forum and community are completely free of charge. The is no payment required at any time as a member of the forum. We are a voluntary not for profit organisation and welcome voluntary donations, but they are not in any way conditions for participating on the site.
2. Are members or trustees of NDSA paid?
No, our Directors are volunteers, donating their time. Within a period of 6 months our current Directors contributed as individuals about 260 volunteer-hours completely free of charge. We are a Community Interest Company and Directors have the right to be paid but choose not to. In accordance with the law, Directors and volunteers can be reimbursed for agreed expenses incurred in furthering our aims.
3. Are you a charity?
We are a Community Interest Company (CIC) limited by guarantee. This allows to limit the liability and enter contracts in the name of the CIC. By law a CIC is not considered a charity, but are acting in the interest of the community as described in our Mission (form CIC 36). Our aims are for the interest of the community. We are registered with the company house under the number 12230781.
4. Are you operational and how do you actively provide public benefit?
We are a new organisation starting up, building our website and getting off the ground. We were operating informally before converting into a Community Interest Company in December 2019. We provided submission to the Autism Strategy consultation and the consultation for the Harmful Content Online, our members as individuals provide support and advice on forums. We are launching our forum and are actively building the tools to carry out our aims.
5. Do I become a member if I register on the forum?
No, by registering on the forum / website you become a user of the forum. You are not becoming a member of the Community Interest Company (CIC) and are not committing to advocacy work. You can choose to become a member of the CIC later and as a separate process, but it is not compulsory or necessary for your use of the forum.
6. Are your activities for the benefit of the community?
Providing community support and peer advice to autistic adults in overcoming barriers and disadvantages of their disability is for the benefit of the community. Providing support for people with a particular disability is deemed to be supporting sufficiently large part of the community, hence is for the community benefit. It is also for the benefit of the community to tackle social exclusion and build capacity of autistic adults to support themselves and each-other, which we aim to achieve by enacting our plans.
7. What is the legal status
We are a Community Interest Company limited by guarantee. This is a common legal form for a limited liability community benefit social enterprise [link to the Resource centre https://www.resourcecentre.org.uk/information/legal-structures-for-community-and-voluntary-groups/]. We are registered with the Company House with the number 12230781.
8. Who can become a member?
Anyone can register on the forum. You don’t need to be a member to use the forum. Membership of the CIC is open to adults over 18 on autism spectrum, who share our aims and vision and are accepting the rules and Articles of Association of the CIC, following a decision by the Directors. To become a member, you need to apply to the Directors via ‘contact us’.
9. How do you comply with the Equality Act 2010?
We are an equal opportunity organisation for autistic people. We have an Equal Opportunity policy. Our focus on neurodivergent adults on the autism spectrum aims to mitigate the disadvantage autistic adults experience in society due to their autism. ‘Equality Act permits non-profit voluntary organisations to benefit people defined by reference to a ‘protected characteristic’, provided the restriction of benefits to people having that characteristic is justified in relation to the purpose. The courts will generally accept that a purpose benefits a sufficient section of the public if its beneficiaries are defined by a need, or a ‘protected characteristic’,, where the benefits are provided in order to tackle a particular disadvantage or need linked to that protected characteristic’, according to the guidance.
10. How is the organisation financed?
We are funded by private donations from members and are developing an operational site in line with our aims. We are actively applying for grants. If you feel our aims and activities are worthwhile, please support us by making an affordable donation and / or become a supporter.
11. Do you have premises?
Physical premises are not relevant to our aims. We operate on our forum and in our online collaborative space. We have a registered address.
We also have an active working team space on Slack. Slack is used by leading organisations like IBM, BBC, Ocado etc. as it enables remote teams to collaborate on the same platform. New joiners can see what’s already been discussed and shared rather than join a conversation mid-stream.
Slack customer examples: https://slack.com/intl/en-gb/customer-stories Slack introductory use video: https://www.youtube.com/watch?v=9RJZMSsH7-g.
12. What about Neurodiversity
Although we are a home for autistic people (with or without co-occurring conditions) we promote the idea that there is a diversity in society. The cut off point between NT and Autistic is nuanced, we are proof of that in trying to help those that miss out on a diagnosis. There is a sliding scale from NT to Autistic. Our society is othering those that are different and sometimes is demonising them. We should be pushing for an understanding that we are not all the same and there should be more tolerance in society.
13. How we manage volunteer applications.
We will post volunteering opportunities on our Advocacy Forum and on Reach Volunteering.
We are open and committed to equal opportunities and welcome applications from all people with the required skills that want to contribute and support our aims as volunteers or even as directors if appropriate, as provided by our Articles of Association. Given the nature of our organisation we have to consider the volunteers’ motivation and fit with our aims as one of the factors amongst others.
We will invite candidates to an online discussion. Prior to this we may exchange with the candidate a few questions to consider. In the online meeting we will introduce ourselves and share key relevant information, the candidates will have every opportunity to ask questions and discuss. We may arrange additional online or face to face meetings as required.
14. Is the forum moderated?
Yes. But it is not pre-moderated, so you need to report to us the posts that violate the rules and terms of use
