**Please note all views in this blog post and website are my own and are in no way affiliated or represent the Derbyshire Autism Partnership Board.**
I attended my first ever Autism Partnership Board (APB) meeting for Derbyshire and I have to say (quite ashamedly) how much it has opened my eyes to the scope of the work and the challenges faced by people working towards parity for those of us on the Spectrum.
Autism Partnership Boards (APBs) were established in each county around England and Wales after the Autism Act 2009 laid the grounds for legislation that outlined the statutory duties of each region to provide for individuals on the Autistic Spectrum. Since this original piece of work there have been a number of updates that have refined exactly what the duties and responsibilities are that must be met regionally.
Jennifer Stothard, an Autism Project Manager for Commissioning and Performance in Derbyshire kindly invited me to this meeting to see if it was something that I might like to become involved in more regularly.
The meeting was attended by a whole host of individuals from across Derbyshire, including representatives from Derbyshire Healthcare Foundation Trust, Derbyshire County Council and the Department for Work and Pensions, and Derbyshire Autism Services. As well as myself, Craig Kennady, another individual living with autism who is also Co-Chair, was present, creating a really strong cross section of expertise within which to share information. Legislation outlines that the APBs much “bring together different organisations, services and stakeholders locally and sets a clear direction for improved services”. Derbyshire has certainly created a strong working group against this first requirement, and the benefits of this became apparent immediately.
The topics covered were frankly vast, and this is where my own insight developed. It is always very easy for a person’s world-view to consist of their own experiences and mine have always been focussed on:
- issues faced by females on the spectrum, from diagnosis to presentation
- the provision of mental health services, and health provision more generally, such as Acute Care, GPs and Maternity Services
- Provision of Social Care to individuals on the Spectrum
- Reasonable Adjustments and Autism in the context of wider Disability landscape
- Employment and Education
- Parenting as a woman on the Spectrum
- Relationships when one or more person is Autistic
This is the point where I have to hang my head slightly. I have always been skeptical about the realities of someone living with autism, compared to the top-down provision for us as a group. I’ve felt let down and often ignored and thought that much of the time much of the work being done was a box-ticking exercise. The large documents and spreadsheets produced in response to Government requirement can reduce you to a statistic, which is never a nice feeling
Participating in the APB revealed exactly how vast the task simply is; reaching into so many aspects of public sector work, that the amount of coordination is quite staggering. Similarly, I was left knowing just how much more there was I needed to think about.
In the meeting the Probation, Criminal Justice System and Courts were covered, the aging population with Autism, as well and provision for service transition from children’s to adult services. Housing and employment were discussed extensively. Even within mental health provision you are talking about Forensic Services, Child and Adult Mental Health, as well as a myriad of specialist areas such as Perinatal Mental Health.
I don’t feel it is appropriate to discuss the exact content of the meeting as I feel much of it should remain confidential. I did however, gain an overwhelming sense of just how committed everyone was to doing a good a job as possible, for the benefit of the Autistic Community in Derbyshire as well as the people working with them.
When the time was right I was able to comment on matters being discussed and use my experiences, referred to indirectly, to offer some insight into how things might be better achieved. It is a really great feeling to walk away from two to three hours work and feel like I have made a positive change and helped other people in a complex undertaking. Since the meeting a number of further opportunities have popped up for me to help, for example, create content for the APB which I am hoping to become more permanently involved in.
I know that it’s not possible, but if many more people could have the chance to sit in on an APB meeting in Derbyshire it might just help relieve some of the very real frustrations experienced. As a group of about seven thousand people in Derbyshire Autistic people are a large group, but relatively small in terms of the overall numbers who live here. We have a tiny amount of resources made available compared to other comparably sized groups, and possibly are far harder to quantify in terms of managing us collectively. Although at some level, you have to work with numbers and statistics rather than individual stories to work effectively. However, what the spreadsheets and graphs don’t communicate well to the reader is the scale of the work that is being undertaken and the humanity of those doing it. Jenn, took on the job working as the adult lead because her eldest son is on the spectrum and I hear many more stories like this; from people who have seen or experienced the problems autism can engender, and who want to do something to bring about change for the greater good.