Photo of Anna Thomas, Adult Autism Support Manager, in spectrum logo with quote

 

My name is Anna Thomas. I am an Adult Autism Support Manager working for the National Autistic Society. I was recently invited to act as a witness at the All Party Parliamentary Group on Autism’s inquiry session on Support in Adulthood.

The point of the inquiry, which is looking at what has and hasn’t improved since the introduction of the Autism Act ten years ago, is to gather information across many different sectors that affect autistic people. In this particular session, we looked at the gaps in services for autistic adults and what more needs to be done to ensure autistic people and their families are heard and supported. What was clear to me throughout the inquiry session yesterday, was that all witnesses were strongly advocating for specialist autism teams in each area to diagnose and support autistic people, and train staff in other services too. In particular, I heard people saying we need more comprehensive post-diagnostic support. It was clear from the witnesses that the current gap in services means the third sector has to try and pick up the pieces, or in some cases people are left with no support at all.

One of the witnesses, Bryony Beresford from the University of York, shared really interesting points about research she has been doing. It has found that there are currently only 18 localities with specialist autism teams, but that where there are specialist teams this can make a big difference to autistic people’s lives.

It is a sad truth that the availability and quality of support services are variable, and that autistic adults face a worrying postcode lottery of care.

I am lucky enough to work in a local authority, Cambridgeshire, who have piloted an approach where the County Council and the Clinical Commissioning Group (CCG) have commissioned the National Autistic Society to provide short term support for autistic adults (specifically those without a learning difficulty who may not meet the criteria for social care support) and also advocacy to help them access other help. We work to support people with a wide variety of issues, including homelessness, accessing correct benefits and mental health support, employment and education. Every day, I see the difference this makes to people’s wellbeing – and think other local authorities should make sure they are doing the same.

During the session, we also discussed the difficulties autistic people face in accessing the benefits they may need to support their independence. Unfortunately, many autistic adults are refused benefits such as PIP and ESA as a result of lack of autism understanding amongst assessors, which means that they can often overlook how autism affects people in their everyday lives. In our service, we support many autistic adults at tribunals to fight decisions made by the Department for Work and Pensions (DWP). All too often, I read reports that make sweeping statements about a person’s cognitive ability.

It was shocking to hear in discussions at the inquiry that suicide is one of the leading causes of death for autistic adults, with many suffering lifelong battles with anxiety, loneliness and social isolation. In my role, housing and homelessness amongst the autistic community is also on the rise, with many people reaching crisis point and needing intensive input from our service, which again, is not currently available across other local authorities. With the right support early on, this can be avoided. More funding would obviously be required to provide these services, but with an aging population and increasing numbers of people being diagnosed and left unsupported, we need to push for this change.