In August, Studio 3 held a free web conference for families titled 'Learning from Lockdown,' which focused on how the Covid-19 restrictions had impacted the lives of young people with additional support needs and their families.
Speakers Andrew Smith, Gareth Morewood and Georgia Pavlopoulou shared their thoughts on lockdown, and we also heard from a variety of young people through their art submissions. This was then followed by a panellist discussion between three parents of autistic children; Jo Billington, Mary Maher and Deanne Shaw.
This article summarises some of the key points from that discussion in answer to some of the questions posed, which is available to playback for free here.
1) How has life changed for you and your family in lockdown?
For many people, life has changed dramatically following the onset of the coronavirus lockdown, and many of our daily routines are very different now to what they were. Mary shared that her daughter went from having a very busy life in a day service, to being in lockdown at home within just 24 hours. ‘Very, very suddenly, the world she has was taken from her,’ Mary explained. It was necessary for Mary and her husband to implement a daily routine to mirror the predictability of her daughter’s day service, which worked extremely well in reducing her daughter’s stress levels. Similarly, Deanne shared that her daughter was removed from mainstream school due to growing health concerns about Covid-19 and her daughter’s medical state. Deanne stated that one of the main challenges about being removed from school was not the lack of structured learning, as she and her daughter were able to adapt a learning schedule to suit them. ‘It’s not about being in school,’ says Deanne. ’It’s about learning and about having your friendship groups.’ The isolation imposed by the lockdown was the most difficult barrier caused by being out of school. Deanne feels that lockdown has shown her that traditional school settings may not be the best environment for children, and meaningful learning can still happen in other settings that better support an individual’s needs. Deanne found that, by ‘letting her [daughter] have a break and letting her do some colouring,’ her daughter was much more focused when it was time to do some schoolwork.
Jo’s experience was slightly different, as she found that her family’s day-to-day life didn’t change dramatically. ‘Our life is quite isolated as it is, we don’t see many people, we don’t do many things, simply because of the lack of accommodation, understanding and acceptance with my children’s differences,’ says Jo. Whilst lockdown didn’t change much for her family’s day-to-day life, it did make them feel less ‘othered,’ as everyone was 'in the same boat as them for once.'
2) How has lockdown has magnified inequalities for many people with additional support needs, particularly children and young people?
Deanne spoke a little bit about the difficulty of trying to implement support for her daughter around the transition from high school to college, due to having to do everything virtually. Deanne stressed that her daughter is very academically able, but her physical disabilities mean she requires a lot of support, and is not very independent which can be frustrating for her. ‘She absolutely has that right to be able to achieve what she wants like all young people,’ says Deanne. Sorting out college virtually has been very difficult, especially trying to work out time for this around the family’s routines, and, in terms of support, they are still seeking a better arrangement.
For Jo and her family, the legal implications of the coronavirus lockdown have been drastic. Jo references the Coronavirus Bill, which essentially removed her children’s rights to education, health and social care instantly, as well as the frailty scale which would deny her children ventilators if they required them. She explains that this gave her the message that her children were ‘expendable.’ The bill has since been amended and the frailty scale was quickly squashed, but Jo still feels that ‘the shock of those inequalities being so laid bare was really quite overwhelming for a while.’ Jo says that access to support was based on the assumption that her children were vulnerable, as opposed to them seeking support based on their best interests:
‘My children are not vulnerable in any way; in fact, they are made vulnerable by a lack of adjustments.’
Mary also felt the impact of the inequalities in Covid regulations for people who require additional supports. If Mary’s daughter had contracted Covid, she would have been taken to hospital alone, as the restrictions demanded. ‘The thought of her entering a hospital on her own, frightened, terribly anxious, without any compassion or understanding from any staff who would see her behaviour in a very different light than we would, that was our main concern,’ says Mary.
2) What unexpected benefits, changes or positives have come from lockdown?
Deanne spoke about the benefit of having a support base at home that is specifically tailored to her daughter's needs and adjusted to suit her as an individual, rather than an entire class in school:
‘I think before we were kind of on that negative spiral. There were a lot of people telling her what she couldn’t do. We have a very can-do attitude in this house, it hasn’t stopped - where there’s a will we will find a way. I think because she is getting our positive reinforcements, rather than some of the negative reinforcements, she is trying loads of new activities. She’s taken up horse riding, she is up at our therapeutic horse-riding centre twice a month.’
Focusing on what her daughter can do rather than what she can’t has led to a positive and optimistic outlook.
Mary, who is a Low Arousal practitioner and a member of the Studio 3 team, has found that her daughter is calmer and much less stressed on a day-to-day basis in lockdown:
‘With less demands and less conditions she's just calmer, a sense of peace has descended on her. I think it was that sense of calm that would have frightened her historically, because a lot of [people we support], they understand anxiety. They might not be able to do much about it, but they understand it, it is familiar. But when that sense of calm comes, it’s almost as if that is scary, and it’s just being able to settle into that because it has come very gently and very softly.’
Jo has also seen reduced levels of stress in her two sons, which has had a massive impact on family life. Her eldest son in particular has benefitted greatly from being ‘able to take life at his own pace.’ ‘Throughout lockdown we have noticed he has become very good at identifying his own needs and then ask for help. His help seeking behaviour has really increased,’ adds Jo. There seems to be a common theme amongst the panellists that the predictability of lockdown life has created a sense of calmness that seems at odds with the fear and confusion the pandemic has caused. Mary says that her daughter is thriving in the new climate:
‘She is just emerging, we are seeing more of her personality emerging as a sense of calm persists in her life.’
Whilst this may seem paradoxical, many of the young people who submitted artwork for the event reported feeling a sense of calm due to less sensory and social demands at home.
Andrew Smith, who spoke at the beginning of the event on his personal reflections on lockdown, spoke about the exhausting pressure of trying to cope in unfamiliar or stressful environments on a daily basis:
‘The problem is you’re trying to “cope” in these environments that don’t work for you, and it’s completely unsustainable. It’s never going to work to do that. That the only way to live as an autistic person is to realise you have to live a different life, and living a different life to the “norm” doesn’t mean it has to be an unhappy one.’
Jo agrees that measuring success and happiness by how social or active a person is can be disabling to many neurodiverse individuals. ‘Is it a paradox [that our young people are less stressed at home], or is it because we think as neurotypicals that engaging and socialising and thriving in a full environment is what the goal is, when actually a goal for an autistic person might just be to be in a quiet space with just one or two others?’
Jo goes on to talk about how difficult it can be for some autistic individuals to survive in these hyper-social and sensory environments like school and college:
‘So many of our children have to do energy accounting, so being able to manage their time, being able to manage their energy, which the lockdown has enabled them to do, because they have the whole space within the day and the evening to be able to do that.’
She also questioned whether ‘autistic people thrive in those situations, or do they just survive?’ With that in mind, what can we as supporters do to reduce anxiety and stress in school, at college, and in other environments, to make sure that autistic children and adults have access to the support they need?
3) What can we learn from lockdown and what experiences should be maintained?
Mary has noticed that the staff in her daughter’s day service (which has recently resumed) are feeling less pressure to fill her day up with outside activities and going out into the community, which has resulted in them listening to her more. ‘It’s building in those down times, those relaxation times, those sitting there doing nothing for half an hour times, that I think are beneficial for her as well. That she doesn’t need to be out, involved, all the time, every day. They can see she is continuing to be very calm and interact really well because they have reduced the amount of requirements on her on any given day.’
Jo also feels there is less pressure to implement conventional supports such as formal education. Jo comments on traditional institutions such as schools, and the pressure on parents of autistic and disabled children to pursue a traditional education. Being in lockdown has shown her that her children are fine without formal education, and that she shouldn’t feel pressure as a parent to force them into fitting these norms. ‘Investments in those structures are so wholesale that possibly we have never had the opportunity to reflect on their value and their true meaning for the young people that are in our care,’ says Jo. She feels that support should be individualised and fit the person’s needs, not society’s interpretation of a meaningful life. ‘They have huge strengths,’ Jo says of her sons. ‘Huge abilities, that have never really been measured by our school system.’ Deanne agrees, telling us that her daughter’s physical health has improved a lot during lockdown, especially her overall wellbeing. Deanne has found that her daughter is ‘able to have a really good day that's focused on her wellbeing as well as learning,’ rather than feeling that those are separate things.
Final Thoughts: Optimism for the Future and Learning from Lockdown
Gareth Morewood, who led the day’s discussions, comments that this period of calm is a great opportunity to review and plan for the future:
‘For me, when things are calm, when things are less frenetic or there’s more stability, that's the time really to be thinking and planning and talking and engaging slowly about what things are moving forward.’
“When someone is drowning it is not the time to teach them how to swim” - David Pitonyak
Jo expressed her hope that something meaningful will come of all the recent changes, particularly the way in which lockdown has magnified the inequalities that people with additional needs face. ‘I’ve got a real hope that something will come of this,' she says. 'Perhaps people will think a little more deeply about the disadvantage that some people are up against, the lack of a level playing field, and I am hopeful of that that there’s been a real education that has come about from this.’
Mary agrees, stating, ‘Covid has been a scary experience, a positive experience, a curveball experience: it’s been all of those things, but I think we’ve come away from it with a greater sense of our own strength, both as a family unit and as human beings.’
Q: What would you recommend for adults who have recently received a diagnosis?
Mary recommends: 'Uniquely Human' by Barry M. Prizant. “I think it is just a lovely book, and it's such a beautiful way of explaining autism as just part of the human condition and not making it something that is other than or less than or damaged/broken.”
Jo recommends: ‘Finding your tribe’ and connecting with groups of like-minded autistic adults. “We are so fortunate in these times that we have vibrant online communities of autistic people that you can find through social media." For example, Andrew Smith has founded an online gaming community for autistic young people called Spectrum Gaming.
Gareth recommends: ‘Welcome to the Autistic Community,’ a booklet from Autistic Self-Advocacy Network (ASAN).
For more upcoming Studio 3 Web events, check out the programme here.
Written by Rachel McDermott
Social Media and Information Co-ordinator, Studio 3