Today is one of those strange bitter-sweet days. I find myself looking back at a solemn memory yet also looking ahead with hope. It is one of those mountain top moments that causes me to pick up a pen and sigh deeply.
Four years ago today my wife and I took a ride out of Boston. We headed south on the I93 to Brockton to meet Dr Woerner, a geneticist at Boston Children’s Hospital. Our social worker, Nicole, was in the car with us. She has asked to join us to find out more about this baffling syndrome, Fragile X, which our son had tested positive for just a few days prior.
Dr Woerner was so helpful, allowing Nicole to join the appointment, listening to all our questions and slowly and compassionately giving us answers in terms we could understand. It was all a bit of a blur, so much to take in, such a complicated, global condition affecting learning, intellect, behaviour, speech and with no clear prognosis as to how it would affect his and our future. Dr Woerner graciously kept repeating herself whenever we got lost or zoned out and stared out the window.
I remember just sitting there shaking my head trying to take it all in.
One of the most striking things for me was when she went through our family tree. She asked us questions about siblings, parents, aunts, uncles and grandparents. She drew out a family tree diagram and then began crossing through certain people with a line and blacking out others.
I’ve since learnt that this is normal procedure; a standard genetic notation. Yet it sure doesn’t make for a positive patient experience. Someone in the genetic research world needs to reconsider the impact of having a diagnostic bombshell completely devastate your world and then having to watch your whole family get obliterated by a pencil.
But perhaps this is partly what makes Fragile X so unique. The family impact with so many people being crossed out only happens with Fragile X syndrome. For Down Syndrome and other conditions, it is rare to have more than one person affected. For Fragile X in is not uncommon to have more than 10 people impacted across one family tree.
Four years later, and the other significance of today is the birth of something new. Today, I started in a new office where I am working on a social enterprise startup called Xceptional. Xceptional is a software firm, which employs autistic people to offer software testing to other companies.
This is not an official launch, as I’ve been working on it for a few months and we are working towards a public launch in a few months time. But it certainly feels a big step to be in a new venue. Probably the closest comparison is this is similar to Xceptional’s second trimester. I’ve been telling a few people about it for a few months, and have been dreaming about it myself for longer. Now there is no hiding it!
Probably the closest comparison is this is similar to Xceptional’s second trimester.
It amazes me that there are not more autistic people working in software testing. So many of the common characteristics of autism, such as a high tolerance for repetition, high attention to detail, strong concentration and excellent pattern recognition, make for excellent software testers.
The CEO of the Webby Awards has worked it out. He said that a testing firm utilising autistic consultants carried out the best testing he had seen in 14 years in the industry. On a similar vein, Peter Thiel has pointed out that Asperger’s can be a big advantage in Silicon Valley, leading to better innovation.
For me, this new enterprise is an intersection between so many elements of my story so far. A decade of working in agile software teams, my social entrepreneurship studies at Harvard, my passion for social impact and our family’s own journey all play their part.
Looking to the future, my vision for Xceptional and our staff is that rather than being crossed out, they would instead be valued and appreciated for who they are. Rather than focusing on the challenges of those who are autistic, I want us all to look to their gifts, the things they can do. To embrace neurodiversity rather than seek to fit everyone into some definition of normal that none of us really match.
I’m so amazed by where this Xceptional journey has taken me so far and am empowered by those who have come alongside me as it takes shape. Yet I’m even more excited by what lies ahead.
How can you get involved? We are getting started with our first round of customers and are looking to add to this group. If your organisation needs software testing services I’d love to hear from you! Get in touch through linkedin or through our website at x-ceptional.com