Organisation Name: Society for neurodiversity
Organisation Email Address: email@example.com
Organisation Phone Number: 07971450062
Organisation Website Address: S4Nd.org
Organisation Postal Address: 8A Hall Street, Halifax Hx1 5AY
S4Nd is a member-led organisation supporting our neurodiverse community. We bring weekly online classes and meetings to our members to all join in , along with one on one sessions to help people find the support they need.
Building a safe environment and one where all our unique differences come together to feel empowered and free.
Society for Neurodiversity (S4Nd) – an introduction from founder, Angie Balmer
S4Nd is a neurodivergent member-led organisation. It was founded because many of us experienced significant difficulties accessing diagnostic services. Those difficulties included lack of support, long waiting lists, complex pathways, being declined assessment, false negative results that required second opinions and having to do it all again for diagnostic assessments of other neurodisablities.
Our vision was to create a space to help neurodivergent people and their families to connect with one another, for mutual support and guidance, to share knowledge and information and engender a sense of belonging. The founding members in meeting one another understood the importance of finding your community and how quickly that connection can improve health and wellbeing for people that have been rejected and feel isolated and alone. It aims to make the vision a reality by supporting people before and after their diagnostic assessment regardless of the outcome. To enable us to secure grant funding to deliver our services, we conducted research to understand people’s diagnosis experiences. We hoped to find evidence that a need did exist for pre and post diagnostic support.
The response to our research was beyond our expectations, 396 people responded to our survey. Unfortunately, 10% of the people that completed our survey reported poor and harmful experiences with our local service, I will return to this point later.
Part of our offer is to support people and their families through the process of asking for a diagnostic assessment for themselves or their family. Our support starts before they approach their GP or mental health practitioner. Many barriers exist in the system that prevent people from receiving a diagnostic assessment. Some people will not make it past their GP or Mental Health professional because they have outdated views of ASC and ADHD. In our research some individuals were laughed at, others were asked why they want a label, some were told they couldn’t possibly be autistic because, they could talk/maintain eye contact/had a job/were married/are female. Those already in mental health services were asked don’t you have enough diagnoses, why do you want another one?
We help people to understand.
1. their local pathways,
2. how to approach their GP or Mental Health practitioner to ask for a referral,
3. the diagnostic criteria in the DSM-5 and how to evidence that they meet the criteria,
4. Patient choice in mental health.
1. information regarding self-administered screening tools such as the AQ10 for Autism and the Wender Utah Rating Scale for ADHD,
2. links to screening tools,
3. information and resources regarding their right to choose a service provider for a diagnostic assessment of a neurodevelopmental disorder (The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012,
4. peer support,
5. Advocacy where necessary.
We are creating a database with details about diagnostic services across England that carry out diagnostic assessments of Autism Spectrum Conditions (ASC) and Attention Deficit Hyperactivity Disorder (ADHD) in Adults, we hope to do the same for children and young people’s services and to include Scotland, Wales and Northern Ireland. Tenacious
Our database will include:
1. who has contracts with the service (CCGs, NHS England),
2. service lead,
3. wait times,
4. accessibility ratings,
5. how to access the service (referral routes (self-referral, GP, CMHT…),
6. the process (referral forms, triage, screening, assessment, follow-up/post diagnostic support), whether they accept RTC referrals,
7. CQC ratings,
8. standardised diagnostic conversion rates,
9. whether it operates using a medical or social model perspective,
10. Cost, if applicable.
Members of S4Nd will be able to review the services. We hope as an organisation we can work with CCGs and service providers to improve pathways and services.