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Birmingham and Solihull Mental health NHS Foundation Trust
Better Together

World Autism Awareness Week 2023

Published: 28/03/2023

Today marks the beginning of World Autism Acceptance Week. To help raise awareness and increase the visibility of neurodiversity, we caught up with Lead for Patient Experience and Coproduction, Rachel Upton. 

In the following article, Rachel explains in her own words what working in the NHS is like when you have autism and the challenges that she has faced along the way both professionally and personally. After a relatively recent diagnosis in 2019, Rachel explains how much she values her innovative and creative mind and how important it is to share her experience with others in the hopes they will get a better understanding of what a day in her life is like. 

Speaking candidly, Rachel also discusses what life is like having a child who is neurodiverse and how this can impact on a young person’s mental and physical health. 

You can read her full story below! 

Living with a neurodiverse brain

Hi, my name is Rachel, I work currently for Reach Out (Low/Medium Secure Provider Collaborative) as the Lead for Patient Experience and Coproduction. I am also an autistic person with a range of other mental health diagnoses. I have been in touch with primary and secondary mental health services since my teens, so over 35 years.

My neurodiverse journey started when my second child received a ‘working diagnosis’ of ‘atypical autism’ in around 2010.

In the years following they were diagnosed with autism, Pathological Demand Avoidant traits, anxiety, depression, suicidal thoughts and pseudo hallucinations amongst other differential diagnostic investigations. I already noted that my older child had always been very different, very intellectual alongside being highly sensitive and struggled at school with ‘strings’ of instructions and hidden social rules – but because they were academically highly able, their other challenges were not ‘seen’ by the schooling system as a problem for the school, although my child didn’t find it easy and behind the scenes also had long episodes of anxiety and self-harm. Things differed for my second child due to how they ‘presented’ in a school setting, eventually leading to a severe mental health crisis and over five years of involvement with the Child & Adolescent Mental Health Service (CAMHS), in-patient care, crisis services and other emergency services.

During this time, it was noted by one of the clinical staff in CAMHS that they wondered if some of my challenges (and diagnoses) might well be better understood in the lens of autism and ADHD. Hence the start of another journey to try and understand my own mental health in a way that might help better day-to-day functioning and strategies to enable me to reduce the frequent episodes of my own crises such as burnouts, shutdown and social misunderstandings.

Alongside a long-standing career in mental health, learning disability and autism services, I often had periods of burnout and poor mental health, despite medications and therapies. Finally in 2019, the diagnostic journey started again and came up with as many answers as questions; nevertheless it provided an understanding of how living with a differently wired brain would always be with me and that, whilst therapy and medication can help, I need to live and work with the brain I have rather than continue to seek an elusive ‘cure’.

The journey continues… I am far more honest these days about the things I am not so great at, I also value the things I can do very differently and innovatively. I am blessed by working with a team of people who understand and support the things I struggle with, and value my quirks and creative approach to problem-solving. I receive support from Access to Work and find that ASD/ADHD Coaching has been brilliant. The Trust were also very supportive in the request for using the best-practice and evidence-based guidelines in neurodiverse recruitment practice.

I live by the mantra that the world needs all sorts of brains, collectively neurotypical brains working with neurodiverse brains can achieve great things. I cannot tell you how to work with your autistic and neurodiverse colleagues because each person is unique, just as much as each neurotypical person is unique. My only and best advice is to take time across your colleagues and teams to get to know each other. One of my favourite statements is ‘seek first to understand then to be understood’. The story above is only one lived experience, but I do believe that bringing diverse people together to improve the quality of patient care, we can collectively achieve better lives for the people we serve.

(* PS. As a post-script, the journey continues with my oldest child now being on the diagnostic pathway. My second child being eventually discharged with a person-centred budget and life plan that has kept them out of hospital for a number of years, and a quality of life and recovery that has changed their life for the better. We all now live far less ‘masked’ and have adapted life to our neurodiverse brains and sensory systems, and openly find solutions to day to day challenges together in a way that works for us all).

Rachel Upton
Rachel Upton quote: I also value the things I can do very differently and innovatively
Rachel Upton quote: One of my favourite statements is 'seek first to understand, then to be understood'