"I hope it will not be too much longer before we can see each other again face-to-face."
Keith Winstanley
- on being reunited with his daughter Rebekah, who is autistic
Stories from the Spectrum: Keith Winstanley
Keith is a former Royal Navy Commodore, National Autistic Society member and father to 28-year-old Rebekah who is on the autism spectrum with high support needs. She currently lives in her own place, with 24-hour support from Rehability UK (a community care and supported living provider). Rebekah is close with her family, and enjoys spending time with other young autistic adults.
Keith talked to us about his daughter and taking part in the round the world Clipper challenge (a 40,000 mile sailing race) to raise funds for the National Autistic Society. He also gave us his thoughts on the recent announcement by the Second Sea Lord, Vice Admiral Nick Hine, that he is autistic.
You have written about how hard it is for you to understand what it must be like for Rebekah. Do you think she is aware of her challenges?
I have long been of the view that Rebekah is more aware of her condition than many others appreciate. Her comprehension and awareness of her surroundings often still surprises me. She can be surprisingly perceptive, particularly with people she knows well and she is fortunate to have extremely close relationships with her brother and sister. I think the closeness of these relationships has raised Rebekah’s own awareness of her challenges.
For my own part I continue to reflect that at times of maximum stress on the Clipper race, when I am cold, exhausted and my senses are overloaded as torrents of water break over me or I am washed off my feet at night, thousands of miles from the nearest safety, it might be the closest I ever come, even if only for a few seconds, to the anxiety and sensory overload that I am often told “is autism.” It remains for me ironic that in those few seconds I may in fact be closer to Rebekah than I have ever been but at the same time thousands of miles apart.
What could society be doing to help Rebekah reach her full potential?
I think a more honest and open dialogue about the difficulties faced by people on the autism spectrum in managing day-to-day life is an extremely important step. And to that end, initiatives like World Autism Awareness Week, Autism Hour in shops and National Autistic Society campaigns such as Too Much Information and Make it Stop are huge steps forward. I have been particularly impressed by those shops and outlets who have embraced the Autism Hour.
That said, there is still much to be done, particularly related to any work regarding treatment and support in the fields of mental health and special educational needs as “we” emerge from COVID-19.
"I think a more honest and open dialogue about the difficulties faced by people on the autism spectrum is an extremely important step."
What are your hopes for Rebekah’s future?
I think my longer-term hopes for Rebekah’s future are largely unchanged. I hope she continues to develop her “life skills” to the best of her potential, acknowledging that defining the extent of that potential is still challenging.
One key part of Rebekah achieving her potential is the care, support and encouragement she receives from her support team at Rehability UK. I can only hope that they, and the thousands like them, get better support from local and national government in delivering their essential services. In the short-term I hope it will be not too much longer before we can see each other again face-to-face.
Your Clipper challenge has been put on hold because of the pandemic. What is the next leg and what are you most looking forward to?
A great deal now depends on vaccinations programmes and travel restrictions/rules world-wide and not just what happens in the UK. There are over 40 countries represented in the crews that make up the Fleet and 14 different nationalities in my “own” crew in team UNICEF.
The race from the Philippines is now starting in February 2022. My own involvement will be in Leg 6 from the Philippines to three ports in China and then across the North Pacific to Seattle, USA. This will take a few weeks.
I will also race on the final leg, Leg 8, from Bermuda across the North Atlantic to a north European port (yet to be announced) and finally into London. One way or the other it will have been a long race!
What are your thoughts on the Second Sea Lord, Vice Admiral Nick Hine’s announcement that he is autistic?
Firstly, I admire his courage in speaking out. To those whom I have heard question why he has only chosen to speak out now I would say, “would you rather he had not spoken out at all?” I have a number of adult friends and colleagues, including two Clipper race sailing friends, who have chosen to speak out or have been diagnosed in later life. I am also now a governor at a local special needs school with young adults about to leave the school environment.
A couple of years ago I was fortunate to listen to a talk entitled “My right to be who I am and who I want to be,” by Adrian Edwards, talking about the challenges he faced as an undiagnosed adult and how this led him to his own assessment of autism. I think the willingness of anyone to speak out and share their thoughts and concerns can only be beneficial in wider education, greater understanding and in lifting some of the stigmas still associated with autism. If Nick Hine speaking out now inspires just one person to reach their true potential, then I take my hat off to him.
We wish Keith the best of luck and a safe journey as he sets sail on the Clipper challenge!
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