Why my late diagnosis of autism was such a relief
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Why my late diagnosis of autism was such a relief

Gerard Wainwright Nursing manager, St Anne’s Community Services in Halifax, West Yorkshire

Learning disability nurse and RCN Nursing Awards winner Gerard Wainwright was diagnosed with autism at 50 and wants more opportunities for the neurodivergent

Like many people with a late diagnosis of autism, I was increasingly aware that I was autistic long before I was diagnosed. Equally, I would often think of reasons why I was not autistic. I have a career as a nurse that requires me to be caring and empathetic, I have a deep love for my partner and children, I am not particularly good with numbers and I do not have a highly specialised talent or photographic memory.

Learning Disability Practice. 26, 1, 14-16. doi: 10.7748/ldp.26.1.14.s4

Published: 06 February 2023

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Picture credit: iStock

However, I did recognise that I find it difficult to form friendships and maintain relationships. I am introverted and avoid social situations. I can easily become overloaded in environments that I find chaotic and busy, like pubs, concerts and gatherings of most kinds.

I also have difficulty processing information and can sail through a life-changing crisis only to be floored by it weeks or months later. In addition, I am highly sensitised to sensory stimulation that most people are either unaware of or can block out. Certain noises, touch and smells can make concentration and focus difficult for me and cause anxiety.

‘It is sometimes said: “We’re all a little bit autistic”. This is incorrect. Autism is a binary condition, you either are or you are not autistic’

Being diagnosed as autistic at 50 by a psychiatrist was a relief and gave me a feeling of acceptance I had not previously known. I realised that I carried a sense of guilt and shame that I find certain aspects of socialising difficult and draining, and that I am not great in groups.

I had a significant developmental delay as a child, which still makes me feel as if I am catching up, and I often felt that I did not fit in with groups. I now understand this is not a personal failing, it is part of my neurotype. It is who I am.

People often carry an unconscious bias

It is sometimes said: ‘We’re all a little bit autistic’. This is incorrect. Autism is a binary condition, you either are or you are not autistic. No one would claim to be a little bit pregnant and the same principle applies with autism.

It is also a spectrum condition. Autistic people are diverse and vary widely in the way their autism affects them. As the saying goes – if you have met one autistic person, you have met one autistic person.

Autism is not always the easiest condition to understand and people often carry an unconscious bias. There is a stereotype that an autistic person is white, male, lacks social skills and is good with technology, maths, or science. They are logical but lack emotional depth. In reality, autistic people are women, they are people of colour, they are LGBTQ+, they are people with learning disabilities and physical disabilities. They are people from every cross section of society.

Society’s bias is damaging as it not only affects how we diagnose people but also how people identify as autistic. The notion that autism is a condition that predominantly affects men is misguided and a person with autism is no more likely to excel in a certain area than a neurotypical person.

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Gerard Wainwright collecting his award at the 2022 RCN Nursing Awards

Picture credit: Barney Newman

We would usually use person-first language to describe people with a protected characteristic – for example, ‘person with diabetes’ or ‘person with a learning disability’. But many autistic people prefer identity-first language because it recognises that being autistic is an inherent part of a person’s identity, not an addition to it.

Our neurotype is who we are, our identity, the way we think and feel. As an autistic person my neurotype is my normality and anyone who varies from that is different from me. This is an example of neurodivergence, as I know that I am different to the prevailing neurotype, which is how society defines everyone.

This can make neurodivergent people feel it is wrong to be who we are and can lead to autistic people masking and hiding our identity, and carrying a sense of shame that it is our fault we do not measure up to the neurotypical norm.

Society values social connection, the ability to form relationships and communicate effectively in groups, and this can present difficulties for some autistic people. While many neurotypical people can and do flourish in social environments, that does not mean they are the right conditions for everyone.

I am working with my employer to help create a workplace culture that is supportive of colleagues with neurodivergent conditions.

Gerard Wainwright’s tips on improving job interviews

For many autistic people, interviews are a stressful process and not the best way to measure our suitability for a post. To promote equality, these small and inexpensive changes can be offered to all candidates.

  • » Share questions before the interview – this can be helpful in overcoming anxieties. Consider the requirements of the role – is it essential to be outgoing and have great social skills? Give a clear explanation of the interview process and what is expected

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  • » Use clear, unambiguous language in job descriptions and during interviews. Arrange the room in a way that is neutral and free from distractions. Minimise interruptions and waiting times

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  • » Think about the interview process and if you can offer an alternative to face-to-face meetings, which can be daunting. Give a clear explanation of the interview process and what is expected

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Autistic people can hide their diagnosis

Open-plan offices and hot-desking can work well for outgoing neurotypical people who excel in busy interactive environments, but can present a barrier to autistic people who may find such surroundings overwhelming and difficult to process.

Only 22% of autistic people are in employment, although this figure is likely to be inaccurate as many autistic people hide their diagnosis from their employer or may be unaware of their autism. Employers can create a workplace culture with identified values that support autistic people.

In the UK, we have employment laws to protect people with certain characteristics. Employers actively promote equality, diversity and inclusion and recognise the importance of creating diverse workforces with representation from minority groups. In the workplace, we increasingly see support groups for people from ethnic minority backgrounds, LGBTQ+ employees, and people with disabilities. With some adjustments we can afford the same support to neurodivergent employees.

There are systemic failings in our society which actively work against autistic and other neurodivergent people, these are mirrored in our workplaces and other organisations.

We know how important representation is. If we see an openly gay footballer, a female engineer, or a black president, that has an effect on the aspirations of people in those marginalised groups. It sets an example and is aspirational. How many openly autistic role models do we see? And how often do they fall into the ‘pale, male and stale’ stereotype?

Difference drives creativity

Greater representation comes with increased understanding, acceptance and change. Neurodivergent people should be given the same consideration as other groups. Difference drives creativity and innovation, we should celebrate and encourage this.

I do not always disclose my autism. Initially I told a few people I trust and, over time, I have started to be more open. By having greater insight, I recognise and capitalise more on some aspects of my autism. This can put me at an advantage over my neurotypical colleagues, because I am focused and will work on something I care about for as long as it takes.

In October 2022, aged 54 – and some 30 years since starting my nursing career – I won the Learning Disability Nursing category of the RCN Nursing Awards. I know that I did not win this despite my autism, I won it because of my autism.

And this is what I mean by that. Being autistic has given me determination and focus that many of my neurotypical colleagues do not have. Recognising and accepting my autism has helped me to understand myself. It has also helped my partner to understand why I sometimes do things the way I do.

Creating the right environment was essential to realising my potential. I hope other neurodivergent employees get the same opportunity.

This is an abridged version of an online article at rcni.com/living-with-autism

Find out more

National Autistic Society (2022) Autistic People and Masking

National Autistic Society (2021) New shocking data highlights the autism employment gap

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