Monthly columnist Carly Jones

30th March 2020 • Emma Cooper

I normally start my monthly column with a ‘so, how’s your month going?’ I don’t think that really applies this month because we all know how it’s going. The coronavirus pandemic has left us feeling vulnerable, scared and frustrated. It’s hit our hearts, health and pockets like nothing our generation has experienced before.

The self-isolation and, maybe by the time this article is published, complete lockdown of our country has also highlighted other aspects of our way of living as individuals and families.  

Communication

Being isolated with only your absolute immediate family, you may imagine communicating would be easy. This time will, of course, make our needs become more apparent whether as a carer, parent, spouse, child or sibling.

With little or no opportunity for personal space or alone time, how will this affect autistic families and what are some tips for communication (yet to be tested to THIS degree but well tested in less pressing circumstances) at this uncertain time for autistic families? Here are mine…

Emotions take time

Many autistic people, both children and adults, can struggle with processing and showing their emotions in a timely fashion. They may not be able to communicate how they are feeling right now in that moment. They may use over working, researching, thinking of theories or ways to help as a logistical coping mechanism. They may also go into a state of shutdown. Our feelings do however catch up with us, so please be patient and understanding both now and when we feel ready and able to communicate our feelings.

Drawing is a language

Art is a great educational tool, a form of therapy and a way to communicate. If you have the space and the materials, leave a table or sideboard with pens, paper, paint or clay on, available for art at any time anybody feels like being creative. Your family members’ creations are often a good way of seeing what’s going on with them on the inside and it helps them communicate without having to start a conversation.

Anger is a language

If your autistic loved one struggles with meltdowns rather than shutdowns, these may be escalating during the pandemic. Not easy for A parent or caregiver and not easy for them either. Having a ‘meltdown plan’ in place to safeguard the whole family can be a useful thing to plan in advance. Make sure the other adults in the family are aware and agree on what action to take if it happens. It may be that you make one room safe and free of anything a person in crisis could hurt themselves with and keep that as a safe space in the event of a meltdown whilst you’re in self isolation.

It could be that you plan for the recovery period of a meltdown too by considering the following:

  • What does mum and dad need to recover?
  • What helps the siblings?
  • What sensory environment can help an autistic family member recover?
  • Perhaps most pressing; what sensory environment can be agreed whilst your family in isolation to ensure your autistic family member doesn’t have to reach distress and crisis in the first place? Anger is a language. Remember, ‘the people who need the most love will ask for it in the most unloving ways.’

Have no speaking days if it helps

Dry wipe boards, What’s app or paper and pen are all ways to communicate. Do whatever works for you. Sometimes a mutually agreed day of no talking and no expectation of speech can be a real healer for autistic people.

Animals as therapy

As an ambassador for Dogs for Autism charity, I know how unique and vital the relationship between a service dog or a family pet can be for the whole household. Making time for that relationship to grow, be it with a dog, cat, hamster or tortoise, is one way of seeing a silver lining in these depressing times. Maybe learn knew ways for your loved one to communicate with their animal friend?

A family is a circuit board

At the risk of showing off my very autistic mind, I liken families to a circuit board – you will always have a live wire and in many families more than one! But to ensure a tight knit circuit doesn’t completely blow up and dysfunction, we need to sometimes be the neutral even if our natural predisposition isn’t. When we can’t control the frequency and energy of others, we can choose to lower our own voltage and keep things going.

This is not the time to limit screen time

Parents often feel the right and healthy thing to do is limit screen time, phone and Xbox use. These are, for many autistic people young and old, our greatest ways of communicating. Times like these, where anxiety is high and we are all stuck at home is no time to start restricting these types of things. You can of course get sneaky with it like I do. Why not ask your young person to make up a story by shouting out what’s happening in their game onto audio notes on their phone? At the end of play they’ll have an action packed story to print off and then spell check.  

Time to write

If verbal communication isn’t your thing, why not get those note books you couldn’t resist buying but haven’t actually used? Write that story, play, poem or song you have always wanted to. These are great ways to communicate and, remember, you don’t have to be perfect at something to enjoy it!

Create

Boredom is the foundation of all creation! Vent these feelings in a positive way by getting creative! There are lots of things going around on social media which are interactive and creative, such as fun YouTube drawing tutorials or craft sessions for kids.   

Dance

So much at the moment is banned but music and dance isn’t. I expect there will be many kitchen discos in the coming days and weeks. Dancing is a great was to communicate and release pent up feelings, just don’t live stream it parents ok…?

Wishing you all the very best health and happiness at this time.

In solidarity,

Carly and the girls xxxx