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BLOG: The Retreat's Expert by Experience, Ronnie Pinder, describes how he is coping with the current situation and his family's safety as an autistic person

Expert by Experience

A week before the UK went into “lockdown” I was in a large supermarket, struggling to catch my breath but still masking my anxiety from the people around me. When I say around me I mean surrounding, several deep and all scrambling for the last few items on the shelves. Panic buying has taken hold and social distancing is a term that hasn’t quite yet entered everyday vocabulary. I struggle at the best of times in supermarkets due to sensory difficulties, an unfortunate co-morbidity that often comes with being autistic. My brain often struggles to filter sounds so I hear everything and at full volume. I struggle even more with visual senses, often becoming dizzy, nauseous and disorientated. But today is far worse than anything I’ve ever experienced. The panic attacks, which I’ve had under reasonable control for some time, are now coming in waves. I can feel myself becoming detached from reality and I’m acutely aware that an autistic shutdown is rapidly approaching. Once I’m back home, in my safe space, I can try to relax. But that’s difficult. I can lock myself away in a quiet room for several hours to help my senses recover but I can’t escape the anxiety and fear. I’m fully aware that everyone is scared and anxious but we autistics can take anxiety to a whole new level. It doesn’t help being bombarded on the news with horror stories. You can turn off the news but it’s still everywhere on social media, often a lifeline for autistic people.

A few days later and my biggest fear is that my wife, a key worker, is still going to work to look after the children of other key workers.

Our two adult children are still going to work as key workers. Fortunately the government has just announced the closure of schools for the majority of students, meaning our three younger children who still live at home will be at less risk. Within a further 24 hours my wife is advised to stay at home as she is asthmatic. She feels tremendous guilt over this but I, perhaps a little selfishly, feel huge relief. All of this helps massively with my extreme anxiety. I’ve been literally terrified and on many occasions have found myself curled up on the floor of whatever room in the house is quietest. This doesn’t mean my sensory overloads and anxiety are under control now that I’m at home all day. Far from it. This is going to take some considerable time but at least at home I can manage them much better. Telephone calls from certain friends/colleagues have helped enormously as they are autism experts and understand what I’m going through. Of course I’m not alone in this. I’ve read online accounts from countless autistic adults who are struggling massively, going through shutdowns, meltdowns and extreme anxiety. I’ve read many stories of autistic children whose parents are struggling to help them cope with the changes in their routines.

If anything I’m playing down how this pandemic is affecting my health but in some ways I’m fortunate. I’m reading social media posts from non autistic people who are struggling with being at home and not being allowed to go to the pub or the gym. It’s like I’ve been practising for this my whole life. Self distancing and isolation? No problem! I’ve literally not left the house now for twelve days and instead of having a negative impact on my mental health, it has helped me enormously. One of our younger children is also autistic, having been diagnosed with Asperger’s a couple of years ago. She is also finding being at home no problem at all. Whilst we do both like our routines we also feel most comfortable at home. Being in the middle of a pandemic and on balance, this is the best place for us at the moment.

I’m being regularly asked for tips on how to cope as somebody who is autistic. The problem is that no two autistic people are the same. However, we do have a tendency to have intense interests and at times like this they can help our mental well being enormously.

I wake each morning breathless, dizzy, nauseous and sweating (how typical that we have a virus outbreak where many of the symptoms are similar to anxiety).

I’ve discovered that if I go upstairs, put on headphones and play my electronic drums that within around twenty minutes my breathing becomes more controlled and my anxiety lessens. The key is finding that interest that results in enough focus that you can temporarily forget the outside world. For me it’s also the perfect excuse to watch even more Star Trek than usual. It has also helped a lot by limiting my news intake to just one read of the headlines once a day. And, very importantly, stop reading all the dubious links that Karen on Facebook has posted. Once a day from a reliable source is enough.

The one good thing about having to stay indoors is all the time I get to spend with my children. We’re doing things we don’t usually have time for and it’s wonderful. The only thing I’ve drawn the line at is joining them doing the Joe Wicks exercises. The pandemic might not kill me but that man will! Seriously though, the things that people are putting online for children is amazing. People are really making the most of things and it’s not hard to see that it’s bringing out the best in many people. I’ve even found myself watching those Gary Barlow webcam duets and if his purpose was to make me smile then he succeeded. Do whatever helps, whatever makes you forget, however briefly. Above all, stay safe.

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