The story of Jon O’Shea, who is aiming to run 351 miles in 26 days, all in aid of The National Autistic Society and culminating at the London Marathon on 3 October
Jon O’Shea is raising funds for The National Autistic Society who do incredible work each year supporting the 700,000 autistic people in the UK and their families. O’Shea was diagnosed with autism in November 2019, so this charity is especially important to him. The National Autistic Society is the UK’s leading charity for people on the autism spectrum and their families. Since 1962, they have been providing support, guidance and advice, as well as campaigning for improved rights, services and opportunities to help create a society that works for autistic people.
O’Shea will be running the London Marathon on 3 October 2021, but actually started his challenge some 25 days ago on 8 September when he ran 1 mile, followed by 2 miles on the 9th and so on, increasing by 1 mile each consecutive day right up to the day of the London Marathon. This will be a total of 351 miles (or 13.5 marathons) in 26 days.
In March 2020 Jon shared his autism diagnosis with his work colleagues and since then he has spoken very openly with the team, offering Q&As in order for staff to find out more.
When you were diagnosed what was your overriding emotion. Fear or relief?
There was a period of three months between self-realisation and formal diagnosis, which was not an easy time for me. The assessment meeting itself lasted for seven hours and obviously covered a lot of personal history. There is no doubt I felt immense relief at the end of the assessment when I was given the formal diagnosis.
What made you think you might be autistic?
I had always thought that “other people” didn’t react in the same way that I did in most situations. I have in the past been called cold emotionally, overly calm or even robotic which is not true, but visually I can certainly give that impression at times. After some banter in this regard at home I started Googling these traits, which led me to articles on autism and that was the lightbulb moment.
What can be done immediately to improve the environment for autistics?
My immediate thought is the difficulty in obtaining diagnosis. I was diagnosed age 51 after I eventually worked it out for myself! The process from realisation to formal diagnosis was just three months, as I did this privately through the National Autistic Society, but through the NHS this can take anywhere between 18 months to three years, which is far too long. Better training of GPs, other health care workers in regular contact with children and teachers to spot “potential autistics” is required, in particular for female autistics who are currently much less likely to be spotted than their male equivalents.
What are the sensory issues?
The vast majority of autistic people have some form of sensory issues, although they can vary enormously from person to person and can also vary from day to day. I have a particular aversion to bright light, which is why one of the lights in my office has been removed. However, the biggest sensory issue for me and in fact most autistics is background noise and our inability to filter this out. The best way of describing it is that I hear all sounds at the same level. Restaurants, shopping centres etc where there is substantial and constant background noise make concentration very difficult. I always carry headphones with me now, which I can use to block out background noise if needed.
What about autism labels?
There is no doubt that there are substantial differences in the support needs required by those on the spectrum. Labels like “high functioning” have been dropped now by the autistic community as they can give a misleading impression. There are times when I certainly do not function highly at all in what most would regard as very basic situations. But many autistics require much greater assistance than I personally need. Most autistics that can advocate for themselves don’t see it as a label, but we can see that others do exactly that. The manner in which we think and communicate is fundamentally different to neurotypicals (non-autistics), but I did not realise how different until the last year or so. The more people like myself talk about it honestly, the better the understanding for others will be. The reality is we don’t want to have to adapt to neurotypical ways, that is exhausting for us and is known as “masking”. Autism is not a taboo subject for us and the reason we don’t feel awkward talking about it is that we are autistic!
Jon O’Shea has fundraised £84,276 to date over the last 15 years for various charities. Please click to support Jon on his 351 Mile Challenge: justgiving.com/fundraising/the351milemarathon. If you would like to find out more about autism, you can also visit the National Autism Society website (autism.org.uk) and if you want to speak to Jon personally you can contact him via email, jon.o’firstname.lastname@example.org