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“This isn’t the time to give in” – My experience of the COVID-19 lock-down

My name is Alexis Quinn and I am the author of ‘Unbroken’ – a best-selling book which details my time spent in various Mental Institutions as an autistic person. Prior to my detention I was considered a gifted academic, teacher, and former professional athlete. I now teach overseas in Africa.

My detention came about when I entered a personal crisis. The catalyst for my descent into crisis was change, societal ableism and ignorance of autism. The odds were stacked against me. There simply wasn’t good community-based health and social care to help me when my needs increased.

COVID-19 and all the chaos it has created is the perfect storm for autistic people. Once again, I find myself in a situation where a personal crisis could ensue and there isn’t sufficient help in the community for my escalating needs. Predictably, it is down to families, disabled people, activists and allies to safeguard one another and remind the world that every life counts.

COVID-19 and all the chaos it has created is the perfect storm for autistic people.

Families, including my own are managing the chaos at home. It can feel isolating and desperate. I for one, am trying to keep my anxiety under control. I am worried about the virus but also about whether I can satisfy my sensory system sufficiently to remain modulated. Like many autistics, I feel pain when overloaded and this pain usually results in low frustration tolerance and a loss of control. I don’t want this to happen and so I feel anxious about that too.

In my home we are making changes to daily and weekly routines. We are coming together and supporting one another. I would encourage others, in these times of uncertainty, to be alert to how our vulnerable members are managing. Let us recognise and remember that our worries, fears and distress are valid. I have a right to feel worried and anxious and depressed at the situation I am in.

Autistic people and people with learning disabilities will struggle. We will likely not communicate our distress in a traditional or mainstream way. When things get too much, challenging behaviour can ensue. So be alert. Be ready to reassure yourself or your loved one that ‘autistic communication’, however it is expressed, is ok. Encourage comforting articulations of difference, where you can. For example, I am constantly researching the virus for hours on end – it’s different and that’s ok!

Be ready to reassure yourself or your loved one that ‘autistic communication’, however it is expressed, is ok.

Keep sight of what is helpful and what isn’t. Consider what you can continue with and what you are finding too challenging. You know yourself or your autistic people best. You know what works and what doesn’t. Trust yourself to know what you can tolerate and what you need to change. Allow yourself to do what feels good in the moment.

We are all spending more time together. This can feel reassuring because family are often a calming safety net. But make sure that new routines (which have sufficient variety) work for everyone in your home because these routines will be here to stay for a little while.

Trust yourself to know what you can tolerate and what you need to change.

Communicate and organise your days. Think about how you can make the most of the space you live in. Family timetables work really well. Time slots for certain activities can lead to new familiarities and can be very reassuring for autistic people and people with learning disabilities. Meals, homework, exercise etc. are all important – schedule them in.

Be realistic. Don’t put too much pressure on yourselves. You don’t need to have a ‘balanced’ day. If you want to spend 8 hours on your special interest, do it. Remember that special interests can be pursued with greater intensity when things get tough. If you find engaging intensely in your interest calming, don’t quash your added enthusiasm. The goal is to try and create consistency where everything seems unpredictable. Obviously, food, drink and sleep are important – try and keep those things regular and routine. Just don’t go to war, when you’re already in a battle.

Our emotions, including anxiety, are going to be high. We don’t display or communicate our emotions the same way neurotypicals do. Let your loved ones and significant others know how to identify your concerns. We need to be able to share our worries and be understood.

Let your loved ones and significant others know how to identify your concerns. We need to be able to share our worries and be understood.

Worries are important to label and normalise. The way these worries are managed is key to averting crisis and keeping behaviour that challenges to a minimum. For example, I know that certain sensory seeking behaviour helps me. I have communicated this to my family and they are supporting me with accessing what is helpful. If I hadn’t have communicated this, and if I wasn’t supported, it would only be a matter of time before I entered crisis.

Living through COVID-19, however long it lasts, will impact on our well-being. Please take time to think about strategies which have worked in the past and look for ways to self soothe. Obvious examples include engaging in a special interest and increasing opportunities for pleasant sensory experiences. Autistic people might like to share time by watching a favourite film, taking exercise or enjoying time together in a creative way, such as making a meal.

Take advantage of being together. The world has become a frightening place for us and the people who care for and love us. Keep fighting and keep trying to make every day more manageable.

The discrimination we experience is real. It’s exhausting. I am sure you are as tired of advocating for access to the basics, as I am. You were probably hoping, pre-corona virus, for more equitable access to appropriate education, health and social care. Indeed, things looked encouraging for a period of time.

Nobody gets to decide who counts and who doesn’t count.

Now, the recent changes in legalisation mean that ingrained, discriminatory practices are likely to not only continue, but disadvantage us further. It’s depressing. There were times since the virus took hold where it has been hard to get out of bed. What has kept me going, as I looked through the bars of my home, is remembering my human rights and the legal duty the government has to uphold them.

So… this isn’t the time to give in. It’s the time to do what you can, knowing that there is a legal duty to respect and protect our rights in this time of emergency. Nobody gets to decide who counts and who doesn’t count. Everyone will need to justify and defend their decisions when this time passes. And it will pass.

-By Alexis Quinn