Meet me halfway
This month it’s a year since I received an autism diagnosis. It has been a year of learning. Like so many others who share their stories of later in life diagnosis, there was a sense of relief.
A relief, to understand why I take everything literally and miss implied meanings. Why I only see the colour of a person’s eyes and no emotions. Why bright light and loud sounds, hurt. A relief, to be able to appreciate why, with a brain that has neurological developmental differences, my daily experience of life contains so many obstacles. To finally know why, I was always somehow lost and overwhelmed. I’ve been autistic all my life, I just didn’t know it.
Alongside the relief and understanding it’s also been a journey through anxiety, frustration, grief, guilt, sadness and shame. The final paragraph of my diagnostic report reads: “it is important you do not use this [diagnosis] as further confirmation to yourself of what you perceive to be your failings, but rather use it as an explanation for why you struggle to manage with some aspects of your life. Perhaps recognise you are able to address some of these difficulties, and move towards a life in which you are more fulfilled.” Only now, a year later, am I starting the next stage of learning to move forwards.
The Eureka moment
Suspecting I was on the autism spectrum is not something I’d had months or years to think about. My bookshelves are full of people management books, books on liberation management, motivating teams, emotional intelligence, positive communication, body language, creating the WOW. My laptop contains an even larger library of saved articles and publications. Studying ‘people management’ has been my homework for over twenty years.
On a rainy Monday afternoon in late January, in a seemingly unending quest to improve my people skills and change my leadership brand, I came across a leadership article that explored social skills and social processes. An article not based on an assumption that senior leaders naturally interpret people through communication, provide social emotional support or even know how to initiate relationship skills. As I read through the article, I was thinking this is exactly what I just don’t get how to do.
I opened another tab and typed in ‘a lack of social skills in adults’. The search results for those seven words changed my understanding. The first article was titled ‘Social isolation and social interaction’ on the National Autistic Society website. As I read more of the explanations about autism, everything suddenly made sense - this is me. On the same afternoon I watched a presentation by Professor Tony Attwood - Asperger’s In Girls. The thirty minute talk described my life through childhood, adolescence and as an adult. I watched it three times.
What to do now?
I didn’t know what to do with this new information, this certainty that I had Autism Spectrum Disorder. I wrote an impact statement, cited the evidence I’d read and heard, the similarities in my personality and emailed the Centre for Applied Autism Research at Bath University asking for advice. A psychologist in the team replied, recommending I contact my GP for a referral assessment with the local diagnostic service. I remember the GP saying: “I have to let you know, that no one I have referred in the past six months has been offered an assessment.”
One of the core values of the company I have worked for, for the past thirteen years is ‘Family: An extended family’. I decided to tell a senior HR manager I’d been referred for a diagnosis.
I say tell, in reality I couldn’t find a way to communicate this verbally, instead giving her a letter explaining about my referral and a copy of the impact statement. I recognised that I would need ‘moral support’ at work in the lead-up to and during the diagnosis process.
In the impact statement, I had described how I seemed to have this ‘dyslexia’ with people: my social, relationship, emotional and communication skills are all jumbled in my brain, I can never quite coordinate them all. I had also included how the strengths, challenges and common traits of autism were directly reflected in reviews, appraisals and feedback.
I was fortunate to be offered an initial assessment for the first week of May, to be conducted at a local mental health hospital. Over the three weeks of appointments, every aspect of my life was the subject of detailed interrogation. It was emotionally and mentally exhausting to re-live through developmental stages, childhood social interaction and my education. As a family we had moved around, living a nomadic life between Southern Africa and England. In the space of one year, at the age of 11, I attended five schools. The assessor explored problems with daily life, difficulties at school, at work, in personal relationships. Questioned the aspects I had learnt to keep hidden through ‘masking’ or ‘camouflaging’, all in an attempt to fit in with family, friends, colleagues, life.
The report arrived the second week of June. It is twelve pages of detailed evidence of my difficulties across - the triad of social communication, social interaction and social imagination. The report concludes: “the diagnostic processes such as this one tend to focus on the aspects that an individual has difficulty with, rather than focus on their strengths.” A year on, I am still learning to focus on the strengths.
After the post-diagnostic appointment in late June, autism and neurodevelopment disorders became my new specialist subject. I read a diverse selection of books, articles and publications. I listened to and watched, hours of podcasts, interviews, presentations, talks and videos from psychologists, medical professionals, researchers, organisations, support groups and those with individual ASD stories to tell. Maureen Bennie wrote an article: ‘Why it takes a village to support a person with autism’. It has taken a global village of autism organisations and advocates in Australia, the USA, Canada, Ethiopia, here in the UK and most recently Iceland, who share their experiences and knowledge, to get me this far on my journey. It has been about finding what works for me, what resonates with my own life experiences.
The parallel journey
Alongside the relief there’s also been a different journey. One that included treatment through IAPT services for anxiety. “Additional mental health problems are substantially increased amongst people with neurodevelopmental disorders” - Kings College London. Until the assessment, I had no idea of the extent to which I suffered from anxiety and the impact of this.
There were moments of frustration for not being diagnosed sooner. Annoyance, that I had missed the traits. I have a classic ‘spiky profile’ in my marked strengths and challenges. If I had been more aware of the world of ASD and developments in neurodivergent thinking, I would have had ‘the Eureka moment’ in my mid-thirties, not my mid-forties. Diagnosis is an individual experience, for me, there was grief for those lost years, the years I can’t get back.
Guilt, that some of the challenging behavioural aspects of my autism and associated anxiety has caused others distress. I am still working through a deep sense of shame. I have a postgraduate in Global Development Management but struggle to make small-talk with colleagues in the canteen or answer the simple question “how are you feeling?”
The C.S.Lewis quote “You can’t go back and change the beginning, but you can start where you are and change the ending” has become my motto.
A year on – still learning
A year after diagnosis, I am still learning the most effective coping strategies and ways to “minimise the impacts of the impairments on my daily functioning and quality of life.” I now appreciate the importance of a holistic wellbeing approach to preventing and recovering from autistic-burnout. I find ASD educational resources which teach children social and communication skills, emotional regulation and interoception useful. The inability to recognise my emotions and express these remains a challenge. I now use an ‘Emotion Wheel’ which helps me identify what I might be feeling. I value the importance and benefits of coaching and mentoring support.
The road ahead
Life gets messy for everyone. Having a complex neurodevelopment disorder or condition makes life that bit more different. At times my ‘hidden disability’ isn’t so hidden.
Often people who are not neurodivergent will ask: ‘How I can support you?’ My reply now: ‘Recognise the courage, strength and determination it takes for me to live in your world. Adapt your expectations, thinking and behaviour, instead of always asking me to adapt to yours. Meet me halfway, so I feel included in your world. Let me show you my brave new world, the world of neurodiversity.’
If you have an experience or views that you would like to share, then please get in touch