Autism, Isolation and Covid 19: Tips and Guidance from a Personal Encounter – Harriet Awuah Agbenowu



I’ve just been having a think and reflecting on a number of things happening during the Covid 19 pandemic. I realise more than ever the need to applaud the amazing work being done by so many people around the world to help our communities get through this extremely challenging phase. I would like to focus in particular on the many Special needs families who are having to or have had to manage the significant and complicated needs of their children at home with no or minimal expertise and experience due to school closures across the world. Some parents will be experienced and confident in meeting the needs of their children with special needs at home. On the other hand, parents of newly diagnosed children, extremely complicated needs and less experienced families would struggle without the hands-on professional expertise they usually access in educational or residential settings.

It is been self-evident that this would be a difficult time. Many would also agree that regardless of our individual circumstances, everyone would be faced with unexpected challenges. A personal Covid 19 encounter has confirmed that a thumbs up needs to be given to all in parenting roles during these times: especially the niche group of parents of children with special needs such as autism, and related conditions. Autism is a condition which affects social interaction, communication, interest and behaviour (You can learn more about autism and other related conditions by visiting our web page www.sparklers.org.uk/conditions)
Many parents of children with special needs depend heavily on schools, playgroups, childcare centres, intervention centres etc. as a significant part of their support network. These provisions usually provide families with some respite time, specialist care from professionals, time to go to work, carry out their personal errands, explore their interests and literally have a life. Therefore isolation, lockdown period as well as the full or partial closure of schools and other services presents some obstacles for this group.
Some challenges which may be experienced by families managing autism during these times include:
• Changes in structure, which usually means a disruption or difference in the schedules and routines of the individual with autism
• Limited options and limited personal power
• Absence of the usual professional support systems made available through the education and health services.
• Concerns over challenging behaviours of their children and how to manage them
• Concerns about their own health and ability to care for their children if parents or carers should become unwell themselves.
• The removal of the friends, families and helpers who make their day to day routines manageable.
• Lack of food, medicines and other basic needs for the home which may run short during a period of isolation or lockdown.
• Difficulties in accessing the community for basic needs during times like these when you have special needs children who do not cope well with transitioning outside the home, longer queues at shops and having no or minimal understanding of social distancing rules or the simple guidelines for keeping safe in the community.
• The difficulties which staying indoors poses for children who need more time than usual outdoors as part of their daily sensory diets and self-regulation strategies.
• Absence of respite opportunities or services for parents and the impact of this on their health.

I personally remember the intense period of vulnerability, panic and anxiety experienced in the first week when our family was unexpectedly forced into unplanned isolation due to Covid symptoms. The first week was a blur of confusion with unanswered questions about the state of my own health and that of my family. Upon reflection, I realise that the panic and anxiety was mainly because we had been unprepared for isolation; not enough food for the required14 days, not enough medicine should the symptoms persist or get worse, no plan for how the children would cope during this time, inadequate information about Covid 19 treatment, what isolation meant and how to manage self, family, work during an isolation (as I am an essential worker), and finally what to do should our health deteriorate. Carers had to stay away from our family and having a husband and siblings who are keyworkers meant a sudden complete removal of my immediate support system during this situation. My chief concern was being absolutely alone my two sons with autism. Both boys have transitioning difficulties which makes it highly unsafe as a lone carer to attempt accessing the community for items such as food and medicine.
There are a few things which helped me get out of this rut and I hope sharing this will help others in a similar situation.

  1. Breathe
    The breakthrough point came when I made a conscious decision to stop, breath, calm myself, begin to take things one day at a time, and tackle issues as they came up. One day at a time. Being calm made it possible to think through the situation, come up with ideas, formulate a plan to get through each day in a sustainable way in terms of our health and wellbeing.
  2. Identify the patterns
    Over the years, I have learned to look out for patterns in my quest to better understand autism, my children and finding ways to support them better.
    So subconsciously I identified patterns in the changes around us, the random seemingly disorganised actions taken to manage situations and the impact on everything and everyone. This helped me figure out what was working well, what was not going so well, and why. For example, slight adjustments to mealtimes and menus led to improvement in sleep patterns.
  3. Ooops! I forgot to put on my cape!
    I realised that I had solutions to some of the issues arising but was not equipped to solve most of the problems.
    This made me quite unsettled initially so I had a heart to heart conversation with myself about what I was struggling with and why this might be the case. I did my best to make sense of the changes for myself within different contexts. For example, my role at home, work and in the lives of Sparklers beneficiaries was still relevant but had to executed in more creative ways. And more importantly, in knowing that with the best intentions and best will in the world, it is always not possible to be everything to everyone, especially during times like these. This helped me remind myself that it is okay not to have all the answers, to focus on what I can do and hope for the best where my hands are tied. I reminded myself that I am not superwoman. I am only human and that surviving on a day to day basis is the greatest achievement of all during these strange times. It was a refining process for my personal authenticity and made me feel a whole lot better.
  4. Develop and establish a plan, routine or schedule
    The steps above made it possible to come up with a plan and the plan was written down in a format accessible to myself and the children. I would advise you to make the resources for the day available and share the plan with the family and helpers so everyone can chip in to make the day productive. Crossing things out as they are completed gives you a sense of achievement. The plan does not have to be perfect, may have gaps and unanswered questions, and would be a starting point which would be refined over time.
    Being a perfectionist, there was an expectation for the initial plan and implementation to run smoothly. I was determined to be the perfect mother, perfect professional and to tick all the boxes on my daily list by the end of each day. That I felt miserable, depressed, inadequate and the biggest failure ever at the end of day would be an understatement. In short, the plan is meant to be your servant: don’t allow it to become your master. Whatever your plan or routine is, keep it simple, manageable, achievable and be prepared to make changes when you need to.
    (Remember that individuals with Autism benefit hugely from proper preparation and processing time where changes are expected, so whatever the future may hold, plan for a transition back to ‘normal’ life after the isolation or lockdown ends).
  5. Staying informed and Communication
    The uncertainty of the developing situation around the Covid virus meant constant daily changes in processes, service provision and policies from the World Health Organisation and government leaders around the world, all with a direct impact on the lives of people. This meant staying tuned to incoming information without becoming obsessed; and then adapting existing plans to make things work for you as best as possible.
    In terms of communication in the home, there is a saying that two heads are better than one and this was found to be useful during these times. Many families tend to run on established systems in ‘normal’ times. The ‘new normal’ would therefore mean a need to discuss the changes in roles and priorities with your child and partner or supporting carer. This does not happen automatically therefore sharing plans, ideas, thoughts, concerns with the trusted supporting adult in isolation with you would prevent misunderstandings and lighten the load of responsibility. It also helps to make things easier to manage in your environment. The use of space and resources while you are all cramped in your little space can also be managed better and with less friction as you communicate and keep each other informed. Isolated parents and carers can try talking these through with friends or family who understand, or their supporting health or social care professionals.
    Some individuals with additional needs may have questions, worries and anxieties around Covid 19. Communication tools such as social stories (By Carol Gray) and comic strips can be used to help them understand while keeping anxiety levels low. Professionals supporting your child in their speech and communication development may be able to advise further on other useful strategies and tools.
  6. Pick your battles…
    Pick your battles and celebrate every achievement! It did not take long after implementing my plan to realise that my to do lists were superwoman long and unrealistic. I was not being kind to myself and that the perfectionist approach of getting everything done and being everyone/everything to everybody was not very sustainable.
    I have often preached ‘Be Kind to yourself’ to others but completely forgotten to put selfcare boundaries in place when this was most needed. Individuals and families who juggle much, need to realise it is perfectly sensible to pick your battles. This was especially important in my case as Covid symptoms were worsening, and my body was weakening. As compared to trying to do everything and feeling a failure at the end of the day, you will finish with a sense of achievement which will positively fuel your overall health and mental wellbeing. This is probably the most important lesson embedded during the turbulent Covid 19 pandemic period.
  7. Take good care of yourself
    Make time to take breaks, rest, sleep and have some ‘me time’. Lack of sleep can affect your physical health, your ability to focus, concentrate, stay in a positive and cheerful mood, thereby making it even more difficult to support your loved one with additional needs. A well-rested body and mind helps to avoid becoming mentally, physically and emotionally overwhelmed. Some of the major concerns during times like these are the inability to get breaks or rests if you are caring for a child with sleeping difficulties. It is crucial that you discuss this with the medical and social services professionals working with your family for some immediate intervention and respite arrangements. It can become highly unsafe for both the carer and child to become sleep deprived. Please seek guidance on this as part of your planning. In my husband’s absence from home, I reached out to friends and co-workers with experience in special needs to sit with my children for short periods while I had quick naps in the afternoon.
  8. Embrace Change
    Accept that several things may have to be done differently, and that different may not necessarily be bad. Some areas in your life may have gaps, such as the 1:1 input of some professionals supporting you or your family e.g. Physiotherapists, therapists etc. This might be an opportunity to learn more about what they do to support you, take ownership of areas with gaps in your skills and knowledge, and find information and resources to keep you going until they became available again.
    The amount of in-depth reading on random topics and google searches about areas I have never focussed much on before increased more than ever during this period. So much more knowledge has been gained in different areas and new skills developed which will be especially useful moving forward, regardless of what the new normal would look like.
  9. Look out for the opportunities and the positives
    Many families will need different amounts of time to adjust to changes in circumstances or unexpected situations. This is okay because individuals with Special needs have different needs and may need different lengths of time and resources to adjust and settle.
    After you have settled however, it would be worth your while to begin to look on the brighter side and to explore all the different opportunities which may be available. In our family’s experience, I saw the following opportunities.
    Time to spend with the children for play, cuddling, learning and just being together as a family – Of course my teacher antennae stayed on for observing my children, celebrating areas they have developed in and spotting gaps which could be worked on while at home. I saw a chance to get them more involved in developing life skills through daily activities such as cooking, cleaning, leisure, exercise, social interaction and play. This knowledge and skills acquired would contribute towards their preparation for life, adulthood and independence.
  10. Reach out and use your support system
    Based on personal experience, I know that many families will find it difficult to get through this period without the support of their friends, families, loved ones, neighbours, colleagues from work, contacts in support groups, charities, churches and other organisations which are reaching out to help in one way or the other.
    On behalf of all families with Special needs, I would like to say thank you for calling and checking on a loved one, helping us keep our spirits up, helping with shopping, continuing to support a child with special needs as a keyworker…

As a final word to everyone and families managing autism or other additional needs, remember that everyone’s experience during times like this will be slightly different, but everyone’s reality is equally relevant.
Do not ever forget to pat yourself on your back at the end of each day. You are doing amazing!!! Keep Safe 😊

Profile:
Harriet is the mother of three children, two with a diagnosis of autism. She is the founder of Sparklers Foundation UK and Ghana and an Assistant Head Teacher in an Autism Special School in the UK.
Websites: www.sparklers.org.uk www.sparklersfoundation.org

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