The measures put in place to reduce the spread of coronavirus (COVID-19) have impacted almost every aspect of our lives – from our contact with family, friends and loved ones, to how we work, eat, shop, relax and learn.
Adapting to and living with these new measures has been universally challenging. For autistic people, the changes to daily life associated with the COVID-19 outbreak present a number of additional challenges. In this blog, we are going to discuss some of these additional challenges, with a particular focus on autistic children and young people. We also highlight some available supports.
Change of routines
A key feature of autism is the desire to follow certain routines and/or avoid unexpected or unpredictable events. Thus, adjusting to the changes caused by COVID-19 poses particular difficulty for many autistic people, for whom changes to routine may cause additional anxiety, distress and in some cases, emotional overload.
Other autistic people may be distressed because of the lack of structure their day now has – being unable to tell one day from the next, when there are no defining characteristics, can feel particularly disorientating.
Scottish Autism have produced guidance for autistic people and their parents/carers on helping to maintain a routine and the reasons why this is important. They explain that not only does maintaining a routine provide a sense of security and stability, it can also help to provide a sense of calmness, support emotional self-regulation and encourage health and positive habits.
Many autistic children already use visual schedules and/or calendars to let them know what is happening and what to expect next. These can be helpful in the current circumstances to help children adapt to new routines at home, and bring some sense of predictability and control to their changed lives.
Being at home
Another change that COVID-19 has brought about is that more people within the household are at home than is typical – for example, one or both parents/carers may be working from home, along with any siblings/other householders who are usually in education or work.
This may be present challenges for autistic people both in terms of the change to routine and also in terms of sensory issues (e.g. noise). For example, the household being busier than usual may be more challenging for autistic people as they will subsequently have less time and/or space to themselves, which may be needed in order to self-regulate and/or avoid sensory overload.
Many autistic people have special interests that form a large part of their daily routines, and may play a key role in enabling them to relax, self-regulate and recover from sensory overload.
The coronavirus ‘lockdown’ has prevented most outdoors activities from taking place. Thus many autistic people may have found that their special interest is no longer open to them – from train spotting to bird watching. The removal of this activity from their life may be experienced as particularly distressing, and make self-regulation more difficult.
The widespread closure of schools means that many parents of autistic children have found themselves responsible for educating their child at home.
Educating children at home under these new circumstances is challenging for all parents. However, for parents of autistic children, it presents additional challenges.
Many autistic children require additional support with their learning, and may experience difficulties sustaining concentration. Autistic children may also have additional support needs such as dyslexia or dyscalculia, which may require the use of specific approaches and/or learning aids. This presents additional challenges for learning in the home environment for parents that are unaccustomed to providing a full time education for their child.
In school, many autistic children receive additional support in class either in a 1-2-1 or in a small group lesson from practitioners skilled in addressing these additional needs. Replicating this level of support at home is of course challenging for parents who may not be familiar with the techniques used, or skilled in their use. They may also struggle to provide the necessary 1-2-1 support if they are also expected to work from home themselves, or have other children to care for.
Concern about their child being disproportionately affected by school closures without the skilled support that they receive in schools may also add considerable stress. For example, the United Nations has recently noted in a briefing paper that children with disabilities and special needs are among those most dependent on face-to-face services and are least likely to benefit from distance learning solutions.
As well as adequately supporting special educational needs, there are also challenges in relation to an autistic child’s ability and/or willingness to undertake schoolwork at home. Some autistic people have difficulties with what is termed ‘flexible thinking’. This may include, for example, the ability to see something in a new way. Autistic children may be more likely to have a fixed perception of home as distinct from school. Thus, it may be more difficult for autistic children to accept and adapt to schoolwork being done at home. Similarly, they may not readily accept the notion that their parent or carer is now also their ‘teacher’, particularly if this person is usually relied upon as being their primary source of comfort and safety when distressed.
Accessible home learning
While this is without a doubt a difficult situation for both autistic people and their parents/carers, the good news is that there is an increasing amount of support and sources of advice available to help support autistic people to adapt and respond to the ‘new normal’ that the coronavirus pandemic has created.
On Twitter, the #accessiblehomelearning hashtag has been trending, with people sharing lots of home learning ideas and support for parents and carers, including tools to support individuals with dyslexia and/or reading and writing difficulties.
Lucy Chetty, Head Teacher at New Struan School has also shared her top tips on education at home. She notes that different young people will experience the changes to life differently – some will enjoy having more control over their day outside of school, whereas others will miss the routines that they are used to.
According to Lucy, happiness and fun is a key aspect of learning. Thus parents and carers should try to find something that interests and motivates their individual child – special interests may be of particular help in this regard.
On a practical level, ensuring clarity is hugely important. This includes providing clear instructions, and setting out a clear beginning, middle and end to the activity. Also recommended is ‘chunking down’ activities into smaller pieces so that there are regular breaks, and the use of visual strips and/or timers to help illustrate how long an activity will last.
As we look ahead to the future, there are a number of critical issues that need to be considered to support autistic children and/or adults to transition back out of lockdown.
Transitioning back into the school environment will be challenging for many autistic children, particularly those that have previously found it difficult to attend school, and/or have experience of ‘school refusal’. For many autistic children, successful school attendance has required a great deal of input from teaching and support staff, parents and the child themselves. This is because the school environment is often experienced as being particularly challenging for a number of different reasons – for example, sensory issues (e.g. noises, smells, lighting), difficulties with processing information, and/or social communication challenges (social skills, etiquette, etc). Many autistic children also experience heightened levels of anxiety, which is exacerbated by the school environment.
Many autistic children will need additional support with the change of routine back to school days and hours, and also with their anxiety levels – particularly if they have concerns about catching and/or spreading the virus, or if other people within the school are perceived to be ‘not following the rules’.
Additional support for transitioning back into school will be particularly important if the new school environment looks significantly different to that which the child is used to as a result of social distancing measures – for example, by attending different hours or days at school, or having different classroom set ups to allow for social distancing – both of which are options currently being considered by the Scottish Government.
Transitioning out of lockdown
In recognition of the difficulties facing many autistic people and their parents and/or carers, the Scottish Government recently announced new funding to help provide additional support in the form of an extended helpline run by Scottish Autism, and the creation of online social support groups by the National Autistic Society Scotland.
Researchers at UCL Institute of Education are also currently conducting research into the experiences and needs of parents and carers of autistic children during the pandemic, which will hopefully help inform how they can best be supported as we transition out of lockdown and into the future, where we learn to live alongside coronavirus.
While there is still a degree of uncertainty about how and when lockdown will be eased across the UK, what is certain is that the easing of lockdown – whenever it happens – will present additional challenges for many autistic people and their parents/carers. Listening to the voices of autistic people and their parents and carers will be hugely important if they are to be successfully supported in this transition.
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