Updated: Aug 10
Six years ago I trained to become a volunteer. The friend who ran the course recognised, tactfully, that it would be families like mine that the other volunteers would be supporting and asked me to talk to the rest of the group about my experiences. She felt it would help them to know what life was like when my son was first diagnosed; how I felt, what I did, what helped and what didn't. One of those present asked me how I had 'the patience' to do everything I needed to do for my son. 16% is how.
Among the handful of attendees was the sister of a Professor of Education who trained teachers to become SENDCos (Special Educational Needs and Disability Coordinators) in their schools. Two months later I stood up in a university lecture theatre with a nervous smile and a stack of index cards and told them too. Some of the teachers came up to me afterwards and told me that I had been brave to share our story. 16% is why I did.
Every year I deliver my training session to a new batch of SENDCos at the university. I stand at the front of their classroom and tell them plainly, what life is and was like. About the barriers, about those who have helped, about how lack of engagement with parents creates hostility and how to forge stronger working relationships. I also talk about the mistakes I have made. Some cry. Most laugh. At the end I send them home hopping mad. 16% is why.
It is the statistic that haunts me. It is everywhere I look, it is in everything I do. It snaps at my ankles when I get tired, shakes me out of gloom, sits me back down at the table to support another pile of homework.
16% is the number of autistic adults in the UK who are in full time paid employment. (The National Autistic Society (2016). The autism employment gap: Too Much Information in the workplace. p5)
My son is unlikely to be able to talk his way into a job. He struggles to initiate conversation and will simply sit and wait to be talked to or will revert to a familiar topic about which he feels confident, often experiences that he has had that upset him or that he did not understand; school plays that he did not want to be in, walks that he didn't want to go on, episodes of bullying, the time when the milk was sour or the weetabix too crispy. He becomes incensed if asked about his hobbies as it is just too personal. I cannot hold his hand in an interview (he would defer all questions to me even if I could) so all I can do is make sure that his academic achievement is as good as it can be for him and ensure that he is able to forge his path surrounded by people who accept him just as he is. Because that is the heart of all this. The neurodiverse should not have to twist themselves into a painful shape in order to fit in to a ready made space. The spaces should be designed from the start to accommodate all sorts of different people. Comfortably.
16% is a shameful stain on our society. 16% screams that neurodiversity is not adequately respected or supported. That difference is misunderstood. That the barriers to education and employment are complex and that all those fighting hard to improve statistics like these are being met with resistance and doors nailed shut. That the traditional method of employing people; application, CV, interview, effectively filter out those who may well have the necessary skills but may not be able to present themselves positively in a previously unseen room with stark lighting, different chairs and strangers staring at them.
This is a team effort that takes 100% from both of us - the stakes are too high for him, or me, to stop. He knows what he wants to do with this life and he is working hard to achieve his goals. He wants to live independently and is excited about his future. I must continue to talk to people that need to improve the statistics for those who think differently and speak in the schools and workplaces that lack the glorious variety that can come with true inclusion. I don't want him to be a part of the 16%, I want him to be a part of a much higher percentage and for this statistic to improve, schools, workplaces and society must change.
We all have a part to play in this. 16% is simply not good enough.
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