Autism Awareness Week 2019

Published 05/04/2019   |   Last Updated 05/04/2019

As this year's Autism Awareness Week 2019 comes to an end, our guest blogger, Emma Durman, Director at Autside, sharest her experience with autism. I was asked to write this guest blog after sitting on a recent ‘Disability Leaders Panel’ event at Cardiff University with Abi Lasebikan, the Diversity and Inclusion Officer at the National Assembly for Wales. There are many aspects to who I am, disability is just one aspect and it does not  constrain me it informs me! It’s ironic to me how the world works – the twists and turns of fate. Because all of the reasons I finally ended up in such a privileged position, were all the reasons I used to believe I never would. Let me explain that a little more. I’m many things. I’m a mother, a partner, a carer, a friend, a sister, a proud Welsh woman from a small industrial town where the smell of sulphur often welcomes you home. I am a writer, a reader, an academic, a tv and movie enthusiast, a ‘geek’, an animal lover and a huge fan of cheese! I am also currently a co-director of Autside, a training and consultancy company that specialises in Autism and neurodiversity, and a final year MSc Autism and Related Conditions student at Swansea University. I am all of these things - and I also happen to be disabled. I’m Autistic, and I have ADHD, CFS/ME, Fibromyalgia, IBS, Asthma, Depression, Anxiety, PTSD, Chronic specific back and hip pain and widespread nerve pain, and likely Ehler Danlos Hypermobility Syndrome. People often say that disability shouldn’t define you, but I disagree. My disabilities/conditions absolutely do define me., but then so do all the other things I listed first. They don’t necessarily CONSTRAIN me though. They inform me, my character, my goals, my interests and even my abilities and challenges. It was when I finally started to embrace all these things about myself, to work with them rather than against, to begin to let go of all the pieces of shame and guilt that had built up over a lifetime a little at a time, that everything started to get better. I began to find a community of people that understood me and could see a more holistic view of who I was, including my business partner Donna, who didn’t look at me and see disability as a dealbreaker. In fact, hard as it is for me to believe most days after a lifetime of disability being the first and sometimes only thing some people see,  I often wonder if she sees disability at all. I’m pretty sure she sees ABILITY, which I think is why we work so well together, and why her respect informs my growing confidence day upon day. My Education and Employment journey. I had struggled in education and then employment my whole life. Despite being told I had the intellect to contribute I couldn’t seem to keep up with everyone else. I barely made it out of school with 6 GCSES after a prolonged absence and a return on a reduced timetable. I went to college but struggled to attend lectures every day, and after my mentor – despite my grades being high – told me it was pointless my being there as my health meant I could never sustain any of my chosen career paths I gave up on education. Thus, I began a cycle of obtaining jobs that I worked incredibly hard at and often did very well in, until I didn’t. Burnout would creep up again and again, with me pushing myself until my life consisted of work and sleep, barely able to wash, eat and clean my clothes. I would cut back on social demands and hobbies, desperately trying to keep up, until I would break, mentally, physically and emotionally. I have been a retail supervisor, a personal assistant, both to a senior partner in a law firm and within the Chief Executive’s department of the local authority. I have been a trainee legal executive. Jobs I loved and valued, that gave me value, and ultimately that I had to give up. For me the interview process was always easy. So were the application forms. It was maintaining the position that stung me every time. Lessons learnt and tips for overcoming barriers to employment. I was only diagnosed Autistic three years ago after the arrival and subsequent diagnosis of our daughter alerted me to the possibility I might be. I didn’t even know that I had different sensory, social and processing needs, so how could I begin to communicate what support and accommodations I might need? Societal barriers have been as much to blame for any of my difficulties and failures as anything inherent to me. If I had been diagnosed and supported earlier, I may have flourished long ago as I am lucky enough to be doing now. The social model of disability is over three decades old and yet we still have so far to go in recognising how societal barriers can impact the level of disability someone experiences. Reducing environmental demands, providing social support and training that increases understanding throughout the workforce can all help us make those boundaries wider, less restrictive, allowing us to accomplish more in a safe way that doesn’t damage our overall health and wellbeing. With the ever increasing incredible array of technology we possess it is easier than ever to work flexibly or from home, either permanently or for part of the time which can have a huge impact on productivity and inclusion for lots of people, myself included. If my story is anything to go by, the importance of allies in the workplace, like my partner Donna, is perhaps the most important thing of all, because they are the doorway to everything else. Final thoughts We need to understand that the disabled, Autistic and neurodiverse community is as beautifully varied and eclectic as the rest of humanity, possessing of diverse and wonderful strengths that we are underutilising to our detriment. In fact, disability often brings as much as it challenges. It can increase resilience, determination, strength and passion. In my case it has also made me grateful for the opportunities that come to me, in a way I may not otherwise have been. I am loyal, and hardworking, and with a streak of perfectionism that is both a skill and a challenge! I am incredibly lucky, to have found a supportive business partner, who sees my strengths, value and talents AND acknowledges my difficulties, struggles and limits, instead of dismissing either. Many disabled people find that either their strengths and autonomy, or needs and limits are overlooked and ignored. We need to get better at the balance that allows us to see both without negating the other. Limits shouldn’t be taboo. In fact, recognising and respecting our limits, and pacing ourselves accordingly can be the key to a meaningful life, and optimum employment. Recent achievements like winning a Welsh Housing Award for our work with mi-space, a contractor specialising in the social housing sector and speaking at an All Wales Counter terrorism conference seem at odds with the version of me that struggles to get out of bed, to wash, to eat, to think clearly, but they are both me. I am Lucky to have found the support and flexibility I needed to thrive. Imagine if everyone, like me, was able to access those same supports. Imagine what could be achieved and the contributions that would be made. We need to do better, as employers, as a society. Because not to do so is a shameful waste of potential and  doing so could mean amazing things.