Last year I was completed blindsided when we were told that my child has autism. Suddenly life at home became much, much harder. And life at work became much more complicated.
I was ashamed that I had spent seven years championing diversity and had not mentioned neurodiversity once. This has now changed and we are, along with Creative Equals and Campaign, hosting the industry's first #diverseminds conference on 1 March.
Whilst researching the content for the conference, I have spoken to many incredible diverse minds in our industry who are creating brilliant work, and find the workplace challenging at times. I don't in any way want to detract from the very real challenges such people are facing. I have also come across a group of people that has been hidden up until now - the parents of children who have been given diagnoses. This group are reluctant to speak up and have a huge challenge on their hands balancing their home and work demands. I want to share with you the key things I have learnt from this amazing group of people, whose children are on the autism spectrum.
1. The process of getting a diagnosis is experienced as trauma
MPs have recently urged action on the lengthy wait for autism diagnosis, with many parents having to wait at least 44 months. Without a diagnosis, parents face a considerable time of uncertainty without any support in place. Once the diagnosis does arrive, parents have to come to terms with the life-changing impact of this diagnosis whilst battling it out in a time consuming system to get appropriate support for their children. In fact many parents give up work at this stage so that they can dedicate themselves to getting the right support. It has taken me a good year to 'come to terms' with the diagnosis, having been through stages of denial, grief and shame on the way to acceptance. Nina Garner, Learning & Development specialist at i-crossing, who has an autistic son agrees, "Hearing your child will never have the future you imagined, the impact on your life and the rest of your family and friends I can only describe as seismic."
2. The demands on their time from home will increase dramatically
The life of a working parent is always challenging, however for those with children on the autism spectrum there is an additional pressure on them. Xavier Rees, the CEO of Havas London has a daughter with Aspergers Syndrome (a form of high functioning autism). "Our family life at home can be very different from the home lives of other parents I work with. In many ways, it is a more rewarding life but it is also extremely demanding, emotionally challenging, totally unpredictable - and impossible for anyone to understand unless they’ve experienced it themselves. My wife and I have had to bend our lives significantly and permanently in ways we never imagined".
Ete Davies is the Managing Director of Analog Folk and has a son that is on the autism spectrum. He agrees; "I'm learning how to adapt to better support Levi, which has meant taking a bit more time on things, establishing more of a routine and ensuring that when I'm with him, my time is focused on him; consciously managing demands and distractions from work, being open and clear with work about the demands on my time and my availability".
3. People don't understand their struggle and so they can isolate themselves
It is very hard to understand the pain and challenges that these parents are facing and I experienced many well-intentioned comments as shaming. The person who said, 'oh my god, that's awful' left me feeling more alone. The people who told me 'at least you've found out now' or 'at least it's high-functioning autism' were just trying to make me feel better, but in doing that didn't recognise the struggle that I was in. Those who told me not to worry, that my son was still the same boy he was pre-diagnosis were, of course, right, but truth was I wasn't able to hear that at the time. I found myself hiding from good friends whilst simultaneously blurting out details of my struggle in situations where it just wasn't appropriate to do so. For the record, the people who stand out in my mind are the ones who asked questions. They asked how I was managing, how my son was and how the autism showed up for him. They knew a response couldn't make me feel better, so instead tried to understand.
4. The pressure on their marriages and their own mental health is huge
Even following diagnosis and acceptance, the struggle remains. There is an added pressure on their parenting and their decisions all the time. Xavier told me, "One of the positive impacts is that work rarely stresses me out, even at its most-pressurised; it’s weird. However there are days when the emotions of managing my own particular form of parenthood leave me a wreck. It requires real energy and application to get myself level before I walk through the agency doors - and it can be very tiring. I used to internalise it all but that was putting me in a bad place. Over time, I’ve learnt to manage it by being completely open about where my head’s at - with everyone I work with". Ete agrees, "Honestly, some days can be really challenging, leaving myself and my partner feeling overwhelmed, drained and frustrated; which in turn can put a strain on the relationship between her and I. But we make an effort to make time for each other and thankfully have a strong support network in our extended family".
5. They know the gifts, understand the challenges and have the passion to create change
The history of autism is one in which struggling parents have fought the system for greater clarity around diagnosis and greater support for their children. Whilst the establishment was fighting the so-called autism wars (debating whether autism was caused by vaccinations due to a now discredited report in The Lancet), Lorna Wing (a parent of a child on the spectrum) co-founded the National Autistic Society and fought for widening the criteria with which a diagnosis would be received. She wanted to increase the number of children who would receive practical support.
Parents in our industry are equally passionate about change - they want to create an industry which will recognise the gifts of their children and support them to thrive. Xavier, Ete and myself will all be at our #diverseminds conference - we want to create a culture in which our children can show up as themselves and be valued for it. We are also passionate about hearing the opinion of those on the spectrum, ensuring they finally get a voice in what they need to thrive.
Tickets for the #diverseminds conference, sponsored by Dentsu Aegis, IPA, Direct Line Group and The Mill are available here.
Roxanne Hobbs is the founder of The Hobbs Consultancy. Her book "Diverted" - a story of resilience, humanity and inclusion in response to her son's autism diagnosis - is out now.