SEN-den is a not-for-profit community organisation, which became formally incorporated as a community interest company (CIC) in August 2019. We came into existence having closely followed the experiences of friends living in Enfield, whose young children were newly diagnosed as autistic. We became aware of the significant gap in support for families with younger autistic children (including during the long and complex autism assessment process) and decided to do something about it!
Below were SEN-den’s observations, which were confirmed by families and local service providers we talked to:
There is not enough timely or ongoing support available for many parents trying to understand, and adjust to, their child’s suspected or confirmed autism diagnosis.
The voluntary and statutory support services that do exist can be difficult to find out about and / or access, when families are struggling to simply get through each day, caring for young children with additional needs.
The supply of available services is increasingly constrained by budget pressures across Education, Health and Care, while the demand for these services continues to increase with every new child that is diagnosed.
There are limited opportunities to meet, and build relationships with, other families on the same lifelong journey, and therefore a lack of vital peer support within communities.
There are few sensory play, sensory learning and general leisure opportunities for autistic children and their families, particularly after-school, at weekends and during the holidays.
There is a lot of autism-related information available online, spread across many websites, but it can be time-consuming, tiring and expensive to find and / or access the specialist information you really need to support your child, from a credible source that you can be confident you can trust.
The situation described above is not specific to families living in Enfield, but reflects the national picture. In November 2019, the Education Select Committee released its report in which it stated that “Many parents face a titanic struggle just to try and ensure their child gets access to the right support.”
SEN-den provides a safe, supportive and informative place (both virtual and physical) for families affected by autism. At our regular play and support groups, and our other activities held at the Lancaster Centre, we listen closely to the experiences that families share with us and each other, to determine what SEN-den might be able to do to help, whether this is developing a new service offer for parents or kids, or feeding back to a local service provider on what isn’t going so well for families.
Some of our particularly engaged parents have joined our Service Development Group, to actively shape new services delivered by SEN-den, as well as offering detailed feedback and suggestions which we share with the relevant service providers and commissioning bodies.
Over the last eighteen months, a growing number of families have confided in us about the continuing challenges they face. Local, statutory service providers that we now work alongside, are aware that there is still more work to be done, but are themselves facing significant pressures, including keeping up with the high number of new children being diagnosed each month.
SEN-den attends many meetings, discussions and consultations relating to SEND and autism, and we contribute as actively and constructively as we can, channeling (anonymously) the experiences and feedback our busy – and often exhausted and stressed – parents have shared with us. Working in this way, representing the experiences of multiple families, means we can identify systemic issues more easily. This is a very important part of our ongoing advocacy and partnership work with Enfield Council and NHS community specialist services; we have already seen some positive changes and look forward to many more!
In the meantime, we hope our services will help you and your family to feel less isolated, access useful, credible information and specialist resources much more quickly and conveniently, and be better supported by individuals, organisations and other small, responsible businesses in Enfield that understand the many ups and downs of the lifelong journey you and your family find yourselves on.
As a community business, we need to ensure that we continue to offer quality and affordable services that are relevant and responsive to the needs of the community we serve, and that we continue to learn and improve as we grow as an organisation. So feel free to get in touch at email@example.com to share ideas and suggestions of what more SEN-den and / or our growing community might be able to do to support you and your family on your autism journey. We look forward to hearing from you!