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“Everybody on that waiting list has been living with the effects of being undiagnosed and unsupported for decades”

Melissa Simmonds and Katie Drinkwater from the Sheffield Autism Partnership Network tell us about what it’s like to receive an autism diagnosis as an adult, the impact of waiting lists – and why diagnosis matters.

Melissa and Katie dressed up for an event, both are happy and smiling.

Melissa (left) and Katie (right).

Nate Dainty

Diagnostic services for neurodivergent adults are struggling across the UK. Data uncovered by Now Then has shown that the situation is particularly dire for Sheffielders seeking an assessment for autism or ADHD, with 5,481 adult service users on the waiting list for ADHD assessment and a further 2,439 awaiting assessment for autism, as of June 2023.

The Sheffield Adult Autism and Neurodevelopmental Service (SAANS) website suggests that waiting times vary from 14 months to 5 years – though the data we obtained suggests that even these estimates are extremely optimistic.

The Sheffield Autism Partnership Network (SAPN) is a network of organisations, autistic individuals and their support systems, who are actively working for an autism-friendly Sheffield, whilst centring the voices of autistic adults in a way that feels refreshing and necessary. I spoke to founder Melissa Simmonds (she/her), and Autism Network Development Lead Katie Drinkwater (she/they), to find out more about the impact of these growing waiting lists.

SAPN
sapn.org.uk

Melissa tells me that she discovered that she was autistic following her son’s diagnosis - a story shared by many autistic parents. When attending a group called Autism Children and Carers Together, she saw her own traits reflected back at her as she began to meet other autistic adults for the first time.

“For whatever reason, I just thought it happened to little boys! And I certainly never thought of them as ever becoming adults,” she tells me.

"I started to see traits in myself, as a woman who had been diagnosed with severe prolonged depression, psoriasis, chronic fatigue syndrome, lots of anxiety. I’ve had several almost-breakdowns, I’ve gone from job to job not being able to cope - and kind of felt like a failure all my life. And then I get to my early 30s and start seeing all these autistic adults and thinking, actually, I’ve got a lot of those traits. And then the more I learnt, the more I kind of accepted that I’m probably an autistic adult, an autistic mum."

Katie, in contrast, was diagnosed just one year ago. Late diagnosis is a familiar story for many women and AFAB (Assigned Female at Birth) people.

“In a similar vein to most AFAB people I'd been diagnosed with depression, anxiety, and other mental health stuff,” she tells me. “Existing as an autistic person in a world that's not designed for the way that your brain works is incredibly anxiety-inducing, incredibly depressing, and makes other people think that there's something wrong with you because of your behaviours”.

It wasn’t until they visited their GP that the subject of autism was raised. She waited around three years for her assessment, as the waiting list had begun to build up a backlog during and after the COVID-19 pandemic.

Melissa shares how, upon receiving her diagnosis, she felt upset when reflecting on everything she’d lost and missed out on, and the ways in which her life could have been different had she been diagnosed in childhood. Receiving a delayed diagnosis can be heartbreaking and life-upending, resulting in anger and sadness about the opportunities missed, and the guilt and shame we carry with us through the years of not knowing.

When asked about the impact of the growing waiting lists in Sheffield, both Melissa and Katie stress how being on an indefinite waiting list for diagnostic assessment can disrupt people’s lives in all kinds of ways. Melissa tells me:

"It has such a detrimental effect on your mental health. It affects your physical health, it affects your relationships, work, your interactions with everything and anything, because you don't understand why you're feeling how you're feeling.

For a lot of people, it's incredibly important to still get that letter. I know some people don't like labels, but then there's a big cohort of us who actually need to know. I need it to be named because then that validates what I'm feeling and what my lived experience has been and all the struggles that I've had."

Katie tells me that in their work at SAPN, they are seeing more and more people hit crisis point as a result of the enormous waiting times faced for diagnostic assessment.

“The journey doesn't begin when you hit the waiting list,” she says, “Everybody on that waiting list has been living with the effects of being undiagnosed and unsupported for decades.”

A phenomenon known as ‘masking’ is described by Autistic researcher Beth Radulski in The Conversation as a situation “where people conceal certain traits and replace them with neurotypical ones to avoid being recognised as neurominorities.” This is often done subconsciously at a young age, as a response to stigma and societal pressures, but masking has also been linked to anxiety, depression, burnout and even suicidality.

One of the most striking things Katie from SAPN describes is how, as soon as a person begins to recognise that they are likely neurodivergent, they can find themselves subconsciously ‘unmasking’, even if they don’t want to - and therefore losing the coping mechanisms they have built up over the years in order to get by.

"That's a lonely experience. To have your world kind of crumble around you, with no support… And it's particularly [scary] for women, and people who have been socialised as women. We know they are more likely to mask… So it's even more like something being ripped away, because we've spent a long time building this perfect front of what it means to be a successful human being, and then suddenly that's gone and there's nobody there to properly hold your hand through it."

The silver lining - if there is one - is that there’s been an increase in the perceived validity of self diagnosis, or self identification, purely because it has become a necessity for so many.

"It shouldn't have taken us reaching this point for that conversation to happen. But if there's a silver lining to take from this then [it’s that this] really necessary conversation is happening, and the tides are starting to turn."

Our conversation turns towards the work that SAPN are doing to help build support structures for the thousands of people who are waiting for a diagnostic assessment. In particular, they have partnered with six voluntary organisations who are members of the network, to look at how services can do better at meeting people where they are. The work involves creating a holistic support structure that enables people to access care and support from within their communities, as opposed to being forced into an often unfamiliar space in order to access the help they need.

"The hope is that they'll be able to get the right kind of support through that really difficult, often very lonely, waiting period, with people who understand what's going on and can help talk them through it in a way that's going to be suitable for whatever their background might be."

At the close of our conversation, we reflect on the importance of hearing the voices of autistic adults.

“Often, as autistic adults, we don't have voices,” Melissa tells me. “Our voices are often drowned out by parents of autistic adults, and of younger children… so I think us being in a space like this is quite rare, and us being so vocal - we're really, really proud of that.”

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