We had a great response to our quick survey about life under lockdown, which ran from 7th to 12th May 2020, with 804 respondents and 555 providing additional comments. Here are the headline results:
A majority of respondents have found that life under lockdown has been easier or about the same, with 37% saying that it was harder.
Easier or about the same
The comments revealed that for those who were finding it easier, this was in almost all cases, not surprisingly, due to the reduction in pressure and demands.
PDA adults reported appreciating life with fewer social interactions, a lack of deadlines, greater control and more time to spend on interests.
The biggest change for most children has been school closures. For quite a few of you, nothing much has changed – social distancing was already a way of life, either by choice or necessity, so the ‘new normal’ is no different. Some children were already school refusing, and the lock-down has taken the pressure off the whole family. Most other children appreciated not having to attend school, but weren’t necessarily keeping up with school work where it had been set. A small number were enjoying remote schooling.
“As an adult life at home is much more under my own control and with less demands on me I am managing work and many things better. Children are also more relaxed while not at school. The transition was difficult to begin with but now I’m enjoying it and thriving.”
“No school = less anxiety, less controlling behaviours, few meltdowns. Able to give more freedom of choice, not forcing ‘home schooling’ at all. More family time, talking time and less stress.”
“Without the pressure/demand and anxiety about going out to school etc. she has been able to look after herself – getting herself up dressed and sometimes voluntarily washing and using medication cream without anyone with her. She is so much more relaxed and open to suggestions. So much happier.”
“Life is easier for my 6yr old PDA son. He really doesn’t like school and is very happy not to have to go. He doesn’t want the lockdown to end because it means no school and being able to be with me (Mum) all day long. We have however noticed an increase in his anxiety. He does not want to leave the house or even get dressed most days. He has also further restricted his diet. It is hard work all being at home in lockdown as he needs to control everything, also school is setting work and he gets very anxious and demand avoidant when any school work is mentioned. There is one reason he might like lockdown to be over and that is so he can go to the Lego shop.”
For respondents who felt life was about the same under lockdown, most mentioned that there were some pros and some cons which evened out meaning that overall things were largely similar.
“The pressure is the same, the sources are different.”
For respondents who said life under lockdown was harder, the comments showed that some are having considerable difficulties.
PDA adults reported having higher stress levels, increasing anxiety and depression. Some felt constrained by the new rules and were less able to access their coping strategies. Others felt a lack of motivation or mental blocks around work.
For some children and young people, anxiety had also increased significantly. Of those explaining how life was worse, more than half related it to deteriorating mental health with a significant proportion experiencing more violent meltdowns.
Parents also reported that having the whole family stuck at home, with no respite from one another, meant it was becoming much harder to cope. For a number trying to keep up with home-schooling, relationships have become more fractured and a small number commented on the impossibility of getting any external support.
Other concerns included anxiety relating to the virus, losing access to the outdoors/regulating activities, lack of availability of preferred foods, contact with friends/family, reduced socialising, everyday routines around eating, dressing, washing and sleeping becoming harder, and, for parents, the issue of school also now ‘invading’ the safe space of home and worries about the return to school.
“I have no freedom. I can’t come and go from my house as I please. I can’t buy whatever food I want when I want it. There is nothing to look forward to. I had things I wanted to do but can’t do them. Feel like I’m not allowed to do anything and scared it’ll be like this forever.”
“Homeschooling is a nightmare – we have daily conflict and meltdowns. Trying to find the only three foods that my child eats has been a huge challenge. I have had to stop work (I can work remotely from home), because my child requires 100% of my attention all day. I’m not eligible for any financial assistance because I’m already on tax credits, so I’ll have to wait for my annual review. We’re isolated, stressed and skint!”
“The routine is broken. I, as her mother, am always her target, so being home means I am the one setting rules, not school. In 6 weeks we’ve regressed 2 years, even with the therapist here daily. The violence has increased severely, and we’re seeing behaviours that we haven’t seen for 2 years. No one knows what to do.”
“It’s totally exhausting. There is no let up. We need to use PDA approaches for absolutely everything, 14 hours a day. He is defiant, rude, controlling, and resistant to all demands – and when you throw schoolwork into the mix … On low anxiety days I can sometimes successfully use PDA approaches (role play, humour, indirect requests, negotiation etc) to get a few minutes of school-related activities done; the effort it takes to come up with novel ways to achieve this every day is utterly exhausting. Weekends should be easier because there are fewer demands but they end up being even more stressful because there are 2 other people (Dad and sister) he’s trying to control in addition to me. Because there’s no break from him we are more likely to let our frustration or upset show which sends him into a tailspin. Our mental health is being seriously affected and I often feel I just can’t take any more.”
For many of us across the world, life in lockdown has been a mixed experience. This comment from one respondent may be echoed across the globe:
“Easier in that I have less demands on me like appointments, social occasions, school run; but more difficult in that there are different anxiety triggers like lack of control over environment and life, no quiet time on my own to recharge, as I am in a small house with two young children and a husband.”
Indeed, other national surveys have also found that anxiety levels have been raised. The Great British Lockdown Survey showed that 55% of people said they’d experienced greater anxiety and 48% had found juggling childcare with other responsibilities more difficult. In a survey of autistic men and women two thirds (66%) said that their mental health was moderately or severely affected.
While not directly comparable, it appears that a higher proportion of the PDA community are finding that life under lockdown may be a positive experience overall, though for others life is exceptionally hard.
Thank you for all your individual comments – please do reach out to family, friends, services or the PDA Society if you feel in need of support. As well as our enquiry line service there are many online groups for invaluable peer-to-peer support and our Coronavirus support pages are regularly updated with helpful links, tips and resources for the PDA community.
As we start to face transitioning back to ‘normal life’, we can reflect on whether there are good parts of life under lockdown we could keep hold of, and think practically about transitions and what might help.