Q&A with Tom Vousden

Tom began his career at SUMMIT in 2011 as a Bridge Builder, working on a mental health service delivered in partnership with Colchester Mind (now Mid & North Essex Mind). He later moved into formal advocacy and became fully qualified in 2016, having achieved his IAQ and Care Act unit. Since 2014, he has been a key member of the Autism Navigation Service. As part of Inside SUMMIT, we spoke with Tom about his experiences and reflections after more than 12 years of working on the service.

Has the autism diagnostic assessment process changed much since you first started at SUMMIT?

I think just the scale of it. When I started in 2014, I would go to someone's house and we'd do some screening questionnaires. Then I'd give those to the psychologists and within three months maximum they would be seen, get a diagnosis, and receive a full report. Now, I think the waiting list for an NHS assessment is nearly four years, and that's because the number of adults who are seeking an autism diagnosis has just exploded. There are also lots of private companies involved now under something called Right to Choose, so the people who want an assessment can pick from eight or nine different providers. So I'd say that's the biggest change: just the sheer number of people, and the timescales involved.

How has the Autism Navigation Service transformed as demand has grown?

When we first started the project, it was just for the autism diagnostic pathway, so you'd only be open to us if you wanted to go through the assessment process. That mostly still is the role, but we are now working with people who already have an autism diagnosis, and another big change has been the increased awareness of ADHD and the wider neurodivergent spectrum as well. We're definitely getting people who want an ADHD assessment, and also people who are looking for both. The majority of our cases are still autism-related, but we do not want to exclude people. It's so close to what we are already doing that we can't ignore it.

Are you seeing many people coming through now who have been affected by the shared care agreement coming to an end?

Absolutely, yes. That's a massive thing. It’s something that has put a spanner in the works with the right-to-choose option for an ADHD diagnosis. We don't advise people, but we would talk about right-to-choose as being an option that would make their wait a lot shorter for an assessment. But now, with the shared care issues around medication and things like that, it makes it tricky because they might have got the quick assessment that they wanted, but their GP might not then accept the prescription. That's something that we need to discuss with the people we’re working with when they're thinking about whether they are going to look at a right-to-choose route, to work out if they can get the medication afterwards.

Do you think the public perception of autism has changed over the years?

Not so much now, but certainly in the early years of the project we’d often see a bump in the number of people accessing the Autism Navigation Service when a famous actor or someone on Bake Off or I'm A Celebrity said they were autistic, and a discussion would then happen on social media or in the news. People are a lot more aware of autism now, but I also think you still find a lot of old preconceptions and stereotypes that aren’t helpful.

What are the common issues that you have witnessed people with autism face in the workplace?

The issues people have at work haven't changed massively over the years. When someone says they are struggling, it's usually around an area I'm familiar with, although it will still be very specific to them. We do a lot of work around reasonable adjustments for people who are in employment, because they’re legally entitled to those. We’ve found there is a better understanding of these adjustments on paper, but the practical delivery doesn’t always follow. It can be very case-by-case in terms of how good employers are at dealing with it. We still meet some very good employers who are open to what we're trying to do, but others seem quite reticent about implementing adjustments. Interestingly, sometimes the large organisations with extensive HR and occupational health teams aren't always the best, even though they have people who specialise in this area.

A big issue can be around communication. There is often a struggle with what people are being asked to do because verbal communication can be quite imprecise. There are lots of implied meanings and logical jumps that some people understand but others, particularly those who are neurodivergent, may not. So we do a lot of work with employers to make language more precise and to use written instructions where possible. Sometimes the communication style of the people we work with is different from that of their colleagues or the public as well, which can lead to confusion around perceived rudeness or bluntness. We are also seeing more issues around sensory sensitivities—lights, sounds, and general busy office environments. Quite often, people would prefer to work from home or work somewhere they can have more control over their surroundings. I think those are probably the two main challenges we come across.

What are some of your favourite things about working at SUMMIT?

I think my favourite part of this job is just working as part of a team that looks out for each other. I love that if you are struggling and knock on someone's door, they will help you. I had an interesting conversation with Gaynor recently, and one of the things she said was that even with all the changes happening at SUMMIT recently, we are still really passionate about advocating for people. That has always been the basis of what SUMMIT do, and we're still motivated by those principles of empowerment and collaboration. We've always been really keen to get involved and get our name out there, and we are doing new and innovative bits of work like the Peer Support Worker roles, for example, that are helping the organisation to survive in a really tough sector. So I think our adaptability and flexibility is really, really exciting, but always with that principle of empowerment and adding to people's voices.