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Autistic and adapting to lockdown

ramblingautisticramblingautistic Member Posts: 2 Listener

Ben is Autistic and likes to use social media as a way of giving people an insight into what it’s like to have Autism. Following the change of routine caused by lockdown, here are his thoughts and the difficulties he has faced.

Guidelines we need to follow

Like most people, I'm currently off work and have been advised to shield. I received a letter where the government advised that I stay in my own room away from others in the house. I also need to ask my family to leave meals at the door and use a separate bathroom.

I know you're probably wondering if I am going to those extremes or not.

The short answer is no. While I appreciate that I should follow the guidelines I also understand that we should apply common sense. So, while I'm not following the guidelines to the letter, I'm also not going out and licking the freezer door handles at the supermarket either.

Disclaimer: I do not advise you do that even outside of a global pandemic!

I am however taking all the usual steps to protect myself and others.

Navigating these changes

Like the rest of the general public, this has had an impact, but not in the way you might think. Being Autistic means I like my space, so social distancing is quite a relief in some circumstances. I enjoyed not having to be prepared for the unwanted touches and people brushing up against you, but I am now struggling with the issues that this brings. Routines are important, as are rules and facts, but I can struggle with social cues and knowing how to react in certain scenarios.

Overhead shot of people walking with escalators.

When I'm in a supermarket and the rules say to keep two metres distance, I can clearly see (knowing from the floor to my hip is exactly 1m) that people are often too close to me.

How do I react? Do I ask them nicely? Do I scream at them because this is the sixth time in the same shop that someone has done it to me? Do I just ignore it and move away if I can? If I move, have I just invaded someone else's two metres? If I have, what do I say? Do I apologise? I don't feel like saying sorry makes up for putting them and their family in danger if I'm a carrier of coronavirus.

I rely a lot on reading people to help me navigate how I should react, but with everyone wearing masks I have also found this difficult. I completely understand why, but it is hard. I've also seen that people with hearing impairments have been finding it hard as they’ve not been able to rely on lipreading to help communicate with others.

The big impact

The change in routine or loss of routine has also hit hard. It took me 26 years to understand and learn all the rules of society and learn social cues that are crucial for daily life. However, every single rule I knew and every situation I learnt how to handle has changed. I have no idea, like everyone else, when or if these will change.

Sadly, there have been Autistic people who have found these changes to be unbearable and haven't had the coping mechanisms to handle them. Regrettably, they have felt no other option but to take their life. So, I would like to pay respect to those people.

This isn’t a moan or anything like that, I just wanted to share my perspective. Everyone is just doing what they believe is right. We might be going through the same thing, but everyone's circumstances are different.

How have you felt with the change of routine? Have you struggled to feel comfortable outside? Let us know in the comments below!

Replies

  • RonniRonni Member Posts: 162 Pioneering
    Hi and welcome
    @ramblingautistic
    I'm not autistic, but found what you said very family.
    Rules and routines many lists. But my live is general. Hate shopping out. To many people to close. Never did learn social skills to navigate things. Lockdown has both solitude and choas.

    It hard to here others not coping to the extent the couldn't go on.

    Where theres no logic I find myself forgetting things more than usual. 
    Trying to find balance and logic  right now is impossible. To much news. Most of it contridictive. And not enough support.

    I find coming on here calming.

    Although one or twice not so calming.

    But the support is. The advice from all is helping me re educate myself.

    It odd that's for most p
    art I understand what's said here. It very different in the real world.

    As a deaf person not fan of the mask it is already very had for me to communicate. Totaly impossible now.

    Thanks for sharing your story
  • vicky50vicky50 Member Posts: 2 Listener
    Hi 
    I understand how your feeling my son has Aspergers her 21, and lives alone in supported living.
    He has really struggled with the isolation, causing his low mood lack of sleep and depression to been overwhelming him.
    He's currently at university and that's not helping he's mental or physical state of mind, with the lack of support from them, He's finding it very difficult to stay motivated.
    Any advice would be greatly appreciated 

  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,694 Scope community team
    Hi @vicky50, it might be worth making a post about this on our parents and carers board where it will be more easily seen by people who might be able to make some suggestions.
    In the meantime, how are you doing today? have you spoken to your son over the weekend?
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • emilyanneremilyanner Member Posts: 63 Connected
    This lockdown has changed everything in my life 
  • ramblingautisticramblingautistic Member Posts: 2 Listener
    Hi all apologies for the delay I didn't quite catch on what these emails where (only recently signed up). 

    @vicky50
    Motivation is extremely hard for anyone at the moment. Especially for someone with ASD. 
    As I'm sure your aware by this stage we generally only complete tasks or activities that have purpose. If they don't have a purpose then it's quite simple.. why bother. The 'tunnel vision' thought process doesn't always allow us to see the other benefits or importance of doing tasks. 
    I'm struggling greatly with keeping routine but a very simple thing I've done is get a weekly planner, I write in a minimum of one task per day and it also has times on to tell me when I expect myself to be up by... It hasn't been followed everyday but most days it is which is helping just keep a smidge of normality. 
    May not work but it's an idea.

    Thanks, 
    Rambling Autistic
  • emilyanneremilyanner Member Posts: 63 Connected
    This lockdown has changed everything in my life  
  • anistyanisty Member Posts: 171 Pioneering
    My 21yr old son is autistic with additional learning difficulties. He lives at home with us, as well as his brother (17) and 12yr old sister.

    We are in Scotland where the lockdown is continuing. My son is not in the shielding category but we struggle to get him out of his room, let alone the house.

    I think he has been out 5 or 6 times since march to help walk the dogs but he loathes physical exercise of any kind and sees no point in it.

    Eating has been a major issue as i have done far more cooking during lockdown but he wont eat anything unfamiliar so many meals have been skipped. He was very thin before, but i should think he is well underweight by now as he looks to have lost a fair bit.

    Not socialising hasnt been an issue as he prefers to be alone anyway.

    Hair cutting - he wont let anyone near his hair and it is looking pretty wild! 

    But on a positive note he is keeping it fairly clean.

    Mood wise, we only really see him when he comes for meals. Some days he is seems very jovial. Other times, monosyllabic.

    He did watch a film with his sister the other day: "days of the bagnold summer"

    That film is almost a study of me and my (now grown up and left home) eldest son when he was a teenager so was a very funny film and my boy enjoyed that.


    Your point about motivation really struck a cord. My son doesnt actually see a point to doing anything just now. He likes the animal crossing game on the computer. 

    Hopefully he will be able to go back to some activities at the centre before the year is out.


    I dont think he has developed any anxiety about going out, he has been ok the times he has agreed to come but he just sees no point in going out to walk around as he hates walking.


    We are having an afternoon tea delivered to our house every saturday and he really, really enjoys that :)
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