March 18, 2021

Autistic people re-entering the world

By rosieweldon

After the Prime Minister set out his ‘road map’ to opening the country up again there was a lot of hype and excitement. Was I excited at the thought of things going back to normal, or terrified? Honestly, I think both.

I can not wait to see my family again. I have a baby nephew I am yet to meet, and many birthdays and occasions gone uncelebrated. I think many people are nervously excited over going back to a world we left behind over a year ago. For most people that’s because it’s just not what we are used to anymore. It will take a while to readjust to the world again.

But for autistic people? There is a huge hurdle of transition up ahead. Overnight the world took away many things I find difficult. I no longer had to sit on a noisy bus, touched by strangers. I no longer had to walk through a town of bustling energy, sit in the office, figure out social events. As much as I crave to see my family and go back to some semblance of normal, there is no denying that at the same time my life has been easier from an autistic point of view for the last year.

My biggest concern is expectations. It feels like while others are nervous, they are also waiting at the door, waiting for the government to open it so they can rush through. I’m not waiting at that door. I’m sat with my back against the wall furthest away, peering at the door with fear. Wanting to see my family again doesn’t remove the huge obstacles I am going to face to get there.

I wrote a while ago about how I used phased exposure to get to the point of eating at the table with my partner and family. I very much plan to use this approach to re-enter the world. I have thought a lot about the best way to approach it – because it will take a conscious approach. There is no throwing myself in the deep end with this, it will backfire. It will be far too much change, and far too intense for me to run out that door with everyone else. Here are the ways I am going to approach it. I hope sharing them may help others. The factors I am considering and conscious of:

  1. Lower my expectations – As I said above, I will not be waiting to rush out the door when we can. I fully accept and appreciate that this will take time. It may take me months, if not years, to get back to where I was pre-pandemic. We have just faced a year of restrictions and lockdown, societal changes and pressures. It’s okay for it to take time to re-enter the world.
  2. Be selfish – There are of course some things I am more looking forward to than others. It makes sense to use those to motivate me to push through the fear of returning to situations. For example, while I will be nervous to be in a room of people again, I can’t wait to meet my baby nephew. While family events are going to be particularly tough, I can’t wait for my family to meet my partner. Those things are more important to me then walking through a supermarket again. I will focus on the things I am desperate to do, while building my tolerance for things like a supermarket.
  3. Crowds – For a year we have stayed 2 metres away from people. For me I have barely been out of the house. I have just been within my household bubble. The thought of being with my siblings and that mayhem scares me. Crowds? They terrify me. I know I will face panic attacks when I return to crowds. I will re-enter the world and adjust for a while before I put myself in a position to be in a crowd again.
  4. Communicate – My partner is incredible and super aware that I will face significant challenges when restrictions start to lift. I am keen to ensure I am open and honest with her about what I can and can’t do, and what I will need help with. We don’t need to do this transition into the world alone. Reach out to those around you, have a support network in place to guide you through re-entering the world.
  5. Phased exposure – Doing this gradually is the key for me and I expect for many others. There is no quick fix to a years’ worth of pandemic lock downs on an autistic mind. I am very much looking at it like a stepped approach. For example, first focus on reintegrating with family, then perhaps entering commercial spaces, and finally to leisure activities like pubs and restaurants. It has to be a tip-toe approach, so I retain control and stability throughout. If I ran out of that door, I am going to crash headfirst into a crowded room driven panic attack. Slow and steady is my motto through this transition back into the world.
  6. Rest and recover – However slow I take this transition; I very much doubt it is going to be linear (constantly successful). There will be bumps in the road. There may be panic attacks and sensory overload. There may be last minute turning down of plans and sleepless nights over a supermarket trip. It is so important that rest and recovery is prioritised. It will take its toll to push ourselves to do these things again, we must also allow ourselves time to feel safe and at peace, to keep the balance.

While I am worried about how I will cope when things start going back to normal, I am also quietly determined. I know I can figure this out and I know others can to. Autistic people need to lean on our support networks, we need things in place to allow stumbles on the way.

If you are supporting an autistic person it is going to be a tough road ahead, we need above all else kindness and patience. The autistic community has some huge hurdles ahead, but I absolutely believe we can do this.

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