High anxiety, confusion and meltdowns – we explore ways parents can help teens on the spectrum deal with change during the outbreak

We know you will have heard this before, but it bears repeating – none of us were prepared for this. There’s no blueprint in place for dealing with the intense anxiety that has come up within all of us, thanks to the coronavirus.

Today we want to narrow in on the specific challenges teenagers on the autism spectrum may be experiencing right now and how parents and caregivers can support.

“The world is topsy turvy a lot of the time, but at the moment this is even more so. If it’s scary for adults, imagine how scary it is for a child who relies on everything being just as it’s meant to be in order for them to have low anxiety.

“While this situation continues, parents of autistic and other neurodiverse children are likely to see behaviours that reflect increased anxiety. Behaviour is communication, and even if your child can’t necessarily articulate to you what’s wrong, they are telling you with the way they are acting, and this can be hard.”

Cathy Wassell, mum to 15-year-old Freya and co-founder of Teen Calm (a subscription service designed to help teens stay calm) explains.

What might be more difficult for teens on the spectrum right now?

We spoke with counsellor Celia Chambers to better understand specific challenges that may be coming up for teenagers on the spectrum who are not only trying to cope with change, but may be trying to continue on with school work.

Routines

“Structure is often really important for a person on the spectrum, and losing the standard ‘school week’ might feel overwhelming or confusing. Mixed in with suddenly having to manage their family’s changing routine, this could easily become a trigger for overload or meltdown.”

Celia adds that, for some, having a stretch of unstructured time could lead to intense boredom or anxiety. “It is often in unstructured times that anxiety and fears are heightened as our brains have nothing better to do than go into survival/planning mode.”

Also highlighting the importance of routine, Cathy agrees and recommends parents or caregivers establish a new routine where possible and keeping as much constant as possible. “Although it may not seem important that a particular drink is drunk at a certain time, there is little enough stability to hold on to at the moment, so stick to what your child knows.”

Sensory processing

“Being on lockdown with no expectations to leave the home or experience potentially challenging environments might feel like a relief for some. However, there will come a time when they will be required to access the world again – and the worry and uncertainty about when this might be (and how difficult it might feel) could overshadow that person’s ability to be present-centred.”

On top of this, Celia notes that with limited opportunities to leave the house, usually easy-to-manage sensations such as touches, sounds and sights might feel overwhelming. This can be particularly challenging when there is little that can be done to escape them.

Allowing teens to self-soothe and self-regulate here is key.

“We have allowed Zac to self regulate as much as he needs too. For him this is watching Big Bang Theory on repeat, talking about DC comics and Flash a lot and skateboarding in the garden.” Rose White, nutrition and lifestyle coach tells us.

Cathy agrees, urging parents to relax usual screen time rules - especially if this is one of their means of self-soothing.

Academia

Teenagers will likely still be expected to continue with school work. Celia tells us that if they find it difficult to generalise activities to different locations, the alien concept of doing school work at home may cause confusion and anxiety.

“This can impact their mental wellbeing, potentially leading to them worrying about their future, how they view themselves, e.g. ‘I’m stupid’ or ‘I’m a failure’, or how their teachers will react, e.g. ‘will they be angry or upset?’”

The pressure to homeschool can also take its toll on parents here. Rose explains that she’s having to remind herself that in amongst the onslaught of teaching resources and assignments being set that she is not failing.

“I am parenting a child with autism in extraordinary circumstances. His mental health and needing to feel secure and loved comes first.

“We have had days of his anxiety spilling out in raging meltdowns because he has found it impossible to translate his school day to his home environment, where he usually rests and recovers from the sensory overload and pressure of having to hold it all together at school.

“We removed the pressure. We worked towards one small goal a day. Sometimes a piece of work, other times helping me with supper. Today he managed to tell me what he needed; ‘I need you to build me an isolation desk’ he said, ‘so I’m not distracted’.

“So we moved his desk to sit between two walls and a door. We gave him noise cancelling headphones. He was calm enough to be receptive to a visual timetable. He had to come to this in his own time. He needed space to readjust.”

“We have spent the first week or so steadying the ground beneath his feet. The maths... the maths can wait.”

Socialising and friendships

Navigating social norms can be difficult for those on the spectrum. With social norms now drastically changed, Celia says the process of keeping in contact, recognising social cues and friendships might feel even harder.

“In these moments, a person on the spectrum may get swept away by their unhelpful thoughts and feelings, and retreat from all social contact. Not only is this not OK in the short-term, but it will also impact how stressful it might feel when schools start up again.”

How can parents/caregivers help ease their anxiety?

Overall anxiety is likely to be high right now, but there are ways parents and caregivers can support.

Normalise

To start with, Celia explains that it’s important to acknowledge and recognise that anxiety is a natural and real response to what is happening right now.

“Acknowledging and allowing these feelings is vitally important. When working with anyone with anxiety, it is vital that we accept the feelings and thoughts for what they are, and then encourage the opportunity to make space for other thoughts, feelings and behaviours that may be more effective to them leading a life of value and vitality.”

If you haven’t already, have a conversation about what’s happening and how everyone’s feeling. Express that it’s normal to feel anxious and worried right now.

Use the FACE COVID checklist

Created by Dr Russ Harris, author of The Happiness Trap, ‘FACE COVID’ is a set of practical steps for responding effectively to the Corona crisis, using the principles of acceptance and commitment therapy (ACT).

  • Focus on what’s in your control.
  • Acknowledge your thoughts and feelings.
  • Come back into your body.
  • Engage in what you’re doing.
  • Committed action (set small achievable goals every day and do them).
  • Open up.
  • Values (explore what’s important to them).
  • Identify resources.
  • Disinfect and distance (when outside).

Connect

Ensure you’re making space to connect with each other as a family. Celia recommends finding activities you can do together, saving the really fun activities for family time and aiming to give them positive feedback and recognition at least seven to 10 times more often than negative feedback.

Help create some structure within their day

“Ask if a timetable may help – making sure it’s realistic – and support flexibility in the timetable by leaving enough space to do something for longer, or change activity sooner.” Celia says.

It’s also helpful to be very clear about expectations, wants and needs at this time according to Celia. Giving the example of unloading the dishwasher, if you want your teen to do this each day, be clear about when you want it done by, how it should be done (ensuring they understand this), how they’re going to take responsibility for it (for instance, would a note or phone alarm be a useful reminder?) and what the payoffs are for getting involved.

Keep offering and providing exposure to potential non-preferred activities

When it comes to schoolwork, chores and other non-preferred activities, Celia advises keeping them short and sweet, mixing them in with preferred activities.

“This will help keep building their resilience to trying things when they’re difficult, and will massively help when the transition period out of lockdown comes.”

Promote healthy habits

Taking care of physical health can be difficult for teens on the spectrum right now, especially if they have a restricted diet and/or are struggling to get physical activity that can help release anxiety.

Celia suggests encouraging healthy habits where possible, including contacting peers, trying mindfulness and exercising indoors, “Why not try and find YouTube videos or websites together that are motivating/interesting to them?”.

Set goals that are achievable

“Even if the accomplishment is as ‘simple’ as getting dressed for the day, make sure your teenager is accessing success and that it’s being celebrated.”

Celia also recommends breaking goals down into smaller ones to make them more achievable, “For example, if you want the dishwasher unloaded, write down all the small steps involved with unloading, and have them visible for the person to follow and tick off. As they get more proficient at it, you will be able to reduce this prompt so they can do it from memory”.

Give yourself a break

Last and certainly not least, Celia echoes Rose’s earlier sentiment that these really are extraordinary circumstances.

“You are probably not a teacher or a health professional – you are a parent first and foremost. Recreating the school timetable and supporting learning is not easy, and not always possible. Focus on the here-and-now of what’s important to you as a family – everything else will come when the world is ready to get back to normal.”

If you’re looking for emotional support at this time, Counselling Directory lists thousands of counsellors who provide sessions online or check out our Get Help section to find more free resources to help you navigate the pandemic and access the help that you need.