This is a guest post from a group of autistic parents, including volunteers from Autistic Parents UK. They each discuss the experiences they’ve have had over the last year and how they’re feeling about the year ahead.
The last year has been very challenging for all of us, and it has certainly had an impact on our mental health as autistic people. Lots of autistic people struggle with change, disruption to our usual routines and the unknown. The last year has had a lot of that! However, this time also opened up opportunities for accommodations which have been really helpful for a lot of us. Reflecting on this, we’ve asked a group of autistic parents to share their experiences over the last year:
Lockdown was a mixed bag for me really. Overall, my anxiety reduced, I think because there seemed to be a reason for my usual sense of impending doom. For the first time I didn’t feel so different from everyone else. I felt like there was less expectations of what I should be doing and how I should be parenting. I really felt much better for the break in pushing myself to do lots of things that I didn’t really want to do.
The lockdown gave me more time to socialise with people remotely, which is my preference really. I find face to face meetings difficult on a number of levels really and not many of my friends communicated much with me in other ways. My two best friends live in other countries I think because we have to communicate that way it’s been easier for me to maintain friendships.
Maintaining friendships remotely has helped with my overall mental health because I felt more able to share and access peer support. My husband was in the shielding group so we really didn’t leave the house very much, I hadn’t realised how much shopping had negatively impacted me previously so it was much preferred once I was able to get home delivery slots.
When I did start going out to shops, I found it much easier because everyone had a mask on. I had my headphones on and a mask on, I would go without my children, I kind of felt like I was in my own little bubble. I didn’t have to worry about smiling at people, or modifying my facial expression at all. I could just ignore people and get on with it. I’m a bit worried about what happens when lockdown is over. I don’t know how much time it’s going to take for me to adjust to everything being different again. I didn’t know how easy it will be to hold on to the things that I found easier during lockdown. When other people aren’t so may not be so accommodating.
I have been seeing a counsellor remotely since the first lockdown and again I find this so much easier than face to face. I don’t have to worry about getting to the session, the lights, sounds and smells. I can see what my face and body language are doing so I don’t have to think so hard about that. I have much more time to focus on the therapeutic process.
It’s been really good to take this time to really work on my mental well-being, because usually I just keep myself busy and ignore everything.
Lockdown for me as an Autistic, ADHD’r was very much metaphorically too far away for me to comprehend. I had ambiguous feelings, a sense of expectation to be shocked but I didn’t really have anything generally socially acceptable to share.
I heard many people fear for their, and their loved ones’ mental health because we were no longer legally allowed to meet face-to-face. The people who usually dominate the social circles seemed to struggle a lot and assumed that everyone felt that way. Not me. It was no different to my regular life; not leaving the house, not compelled to socialise in order to maintain my well-being.
But suddenly the topic of mental health soars to the top of the pile of issues in need of attention.
Why was this not the case when we, the Autistic ‘minority’ were suffering. Surely this is an opportunity not to be missed? Can empathy and experience help us move forward. When things go back to ‘normal’ what is life going to be like? Will it be better for everyone and would society function more positively if Autistic & predominant neurotype (PNT) ways were adopted on an equal footing?
During the pandemic I recognised early on that the constant changing of rules would have a detrimental effect on my health – and it did. To manage this, I created my own guidelines and was pretty much in lockdown for an entire year. This enabled me to exist as an autistic person somewhat detached from neurotypical society.
The space this offered enabled me to control my environment much better and to avoid the outside pressures that can be so harmful to autistics. Through this I was able to start to unpick what “masking” meant on a personal level and what it looked like. The more we mask the more we suffer, and for who? To what end?
Going forward I feel more able to catch myself masking and I am making an effort to not do it. I have explained this to friends and to my manager. It isn’t ok that hiding disability is the societal standard.
From now on I will be speaking up before struggling; if I know a situation will cause me distress as an autistic person I will ask for adjustments so as to prevent this burnout cycle I have journeyed along for 34 years. I want to feel healthy, I want to have energy, I want to feel well and happy.
I feel that lockdown has forced empathy on neurotypical people to understand to some extent how autistic people often live – knowing that the outside world is damaging to them and feeling that their only option is to disengage or live with a low quality of life.
Overall I have entered a new stage of life and plan to carve out my place in the world rather than only interacting with it in a manner than has a negative impact to me.
I really struggled during the first lockdown, as the nursery my toddler son attends was closed. I couldn’t be furloughed and my husband is an NHS worker, so I was working from home in a pressurised role while also trying to keep my son safe, fed and entertained.
This is stressful enough for a neurotypical parent but as an autistic person I found it one of the hardest challenges of parenthood to date (and I had PND so that’s saying something!). I couldn’t focus on anything, my mental health plummeted and I went into full burnout. Every minute of my day was spent looking after someone else’s needs, with not a moment alone to stabilise and ground myself. I ended up taking two months sickness leave.
Those two summer months were actually pretty great being able to dedicate daylight hours to him and we spent lots of time outdoors just enjoying nature. Then, once he was back at nursery and I could just focus on my work at home, I came into my own and it’s been both the most relaxing and productive time for me. I don’t miss the office at all (where people would constantly come up to my desk to chat or ask questions and throw me off focus).
Finding out my employer would like my team to work from home permanently has been such a relief, knowing I only need to go into the office maybe once a week for meetings. I’m optimistic about maintaining this new work life balance I’ve found, getting housework done in short breaks and at lunchtime means I have more weekend time which I can spend with my family and dedicate to my hobbies. I’m stimming a lot more as there’s no need to mask when I’m at home, and I hope I can continue to just be myself, as things open up again.
My biggest worry is that social pressures will be exacerbated as extended family and friends make demands on our time after a year of not seeing us, but I’ve gotten better at saying no and my husband has seen the vast difference that having my space has had on my mental health, so I hope that he will support me in declining invitations when needed. Here’s to whatever the new normal looks like!