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Meet Andrew Hensman, chair of the National Autistic Society Essex Branch an elected member of the Braintree District Council. Andrew is also co-chair of the Essex All Age Autism Partnership Board that was set up in response to the Autism Act.

To mark the ten year anniversary of the Autism Act, Andrew tells us more about what the Autism Partnership Boards are and how they help create a society that works for autistic people…

What is the Autism Partnership Board and why did you get involved with it?

The Adult Autism Strategy says that it’s essential that autistic adults, parents and carers are involved in the development of local services and recommends setting up local Autism Partnership Boards that aim to improve services.

My work with Essex County Council predates the Autism Partnership Board as I recognised an omission in the National Autistic Society I Exist campaign, which found that autistic adults in England felt isolated and ignored. Social Services received many postcards telling them of the hundreds of autistic people who live in Essex, but there was nowhere on the card for us to put our details. Being relatively newly diagnosed, I was desperate for any help I could get and I was frustrated with the blank card. As a result, I was invited to join a group working on the submission to the Department of Health which, together with other local authority submissions, would form the basis of the Autism Act. Essex was singled out as a model submission, having been innovative in thinking outside the box and including autistic people to form the research for their submission.

My main aim was to create clear pathways for diagnosis, having struggled with my own journey.

I finally obtained an autism diagnosis at age 33. I wanted to see appropriate services put into place, from diagnosis to on-going support, as autism is a lifelong disability. Greater understanding and tolerance gave me the confidence to do more than I would have done previously, which saw me voted in as the new co-chair of the new Board for 2019. At the Partnership Board, I prove that with appropriate support, it is possible take an active part in many things.

What has the Essex All Age Autism Partnership Board achieved so far?

The first thing we recognised was that there was no suitable support in Essex. Having personal experience, the Board suggested that I approach the National Autistic Society and form a branch in Essex where people who are struggling could contact us and we could reassure them that they are not alone and signpost those people to appropriate help. I could then feed anonymised enquiries back to the Board to provide evidence for what services are being requested and what they should look like.

After a few years of ensuring we were inviting the right people around the table, we realised that having two boards (one for children, one for adults) meant a lot of people were hearing the same thing twice. In response, Essex disbanded both boards, and then reformed as the All Age Autism Partnership Board as it was recognised that autistic children become autistic adults and always deserve the right support.

What are you trying to achieve next?

The new Board is still in its infancy and I am optimistic that the services can be built upon. Already a new diagnosis pathway has been announced in Colchester, which should put an end to the postcode lottery of support in Essex.

A frustration is that we have many passionate people, from the Department for Work and Pensions, Education, Clinical Commissioning Groups, Mental Health Trusts and Police who have been selected to attend from an organisation and may not be in a position to change anything beyond their own team. Many people have the misconception that the NHS is one big nationwide organisation. It is, in fact, made up of many small organisations, each with its own budget. While these organisations address local issues by being individually tailored to suit local populations, they do not allow for something that should be commissioned nationally. The Partnership Board could address these points but may have little effect, which is why I maintain my aspiration of taking these findings nationally and creating something for everyone, no matter their age or where they live.

What would you like to see change following the Government’s review of the autism strategy and what are the gaps at the moment for you locally?

Autism falls through the cracks between learning disabilities and mental health and I would like to see a third option that supports autistic people.

Autistic people can sometimes appear less vulnerable than they really are, as people with unrecognised disabilities can also feel socially excluded, isolated or treated like a child.

There should be reasonable adjustments made to ensure a better understanding of autism is deployed throughout the benefits system, the justice system and mental and physical health services. Self-harm is also a big issue, with guidance required to help prevent it throughout life.

Central Government should task a few departments to form a national response, otherwise there are many partnership boards all doing the same work and all coming up with similar conclusions, each costing unnecessary additional funds which could be redirected into much-needed services that help create a society that works for autistic people.

This year marks the 10th anniversary of the Autism Act in England and we are working to find out more about the state of care and support for autistic children and adults across the UK. Take the Autism Act: Ten Years On survey to help us tell the Government what needs to change.

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