How might the world pandemic be affecting your children and teenagers who are on the autism spectrum? (And how you can help).

What might children and teenagers on the autism spectrum be finding difficult right now?

This is obviously a potentially stressful and traumatic time for everyone impacted by coronavirus. For those on the autism spectrum, the effects can vary substantially between extreme relief (due to no longer having the rigour and stressors of school) to anxiety, worry and meltdowns. Here are some factors that might particularly impact the mental wellbeing of a young person with autism:

1. Routines – Structure is often really important for a person on the autism 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. In addition, people with autism sometimes have a limited range of leisure skills and activities, and so having a glut of unstructured time might 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.

2. Sensory processing – Being on lockdown – with no expectations to leave the home or experience potentially challenging environments – might feel like a relief for some people on the autism spectrum. However, there will come a time when that person 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. Further, if opportunities to leave the immediate environment are limited, then normally easy-to-manage sensations such as touches, sounds and sights might feel overwhelming or even physically uncomfortable – this is particularly challenging when the person with autism can do little to escape them.

3. Academia – School-age people on the autism spectrum will still be expected to complete their schoolwork and carry on with their studies, without any of the specialist help they may receive at school, and their academic learning may take a hit as a result. Further, if their ability to generalise activities to different locations is limited, the alien idea of doing schoolwork at home may cause confusion and anxiety. Again, this can impact the person’s 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?)

4. Socialising and friendships – People on the autism spectrum often find socialising and navigating social norms and friendships difficult, and naturally this can cause anxiety. Now, with the social norms dramatically changed, the process of keeping in contact, recognising social cues and friendships might feel even harder. In these moments, a person who is autistic 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 massively impact how stressful it might feel when schools start up again.

5. Health – Some of the less spoken-about effects on a person on the autism spectrum might be on their physical health. For example:

    1. Diet: If a person has a restricted diet, the recent panic-buying may have limited what they are able to eat.
    2. Sleep: With the lack of structure and routine, their sleeping patterns may become disturbed, which will naturally impact their mental health and anxiety.
    3. Exercise/movement: Some people with autism need lots of exercise and movement to release anxiety (and feelings in general). Without this regular opportunity, they could struggle with the enforced lockdown.


How can parents / caregivers help ease their anxiety?

1. Normalise – It’s important to recognise that anxiety is a very natural and real response to the world phenomena we are facing 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.

2. FACE COVID (Russ Harris, 2020) is a very useful checklist:

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

3. Connect – For instance:

  1. Find activities you can do together
  2. Save the really fun activities for family or parent/child time
  3. Let them know you care – you should aim to give them positive feedback and recognition at least 7 to 10 times more often than negative feedback

4. Help create some structure within the 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.

5. Offer options/choices – For example, instead of saying “What do you want to do?” or “What do you want?”, ask instead, “Do you want to play a game, or watch a movie?”

6. Be clear about expectations, wants and needs – If you want them to unload the dishwasher each day, be clear about when you want it done by, how it needs to be done (check that 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.

7. Keep offering (and providing exposure to) potential non-preferred activities – When it comes to schoolwork, chores, learning new skills, and so on, try to keep these “short and sweet” and mix 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.

8. Promote healthy habits – Of course, this can have several dimensions: food, exercise, staying in contact with peers, mindfulness, and so on. Why not try and find YouTube videos or websites together that are motivating / interesting to them?

9. 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.

10. Break big tasks / goals down into small ones – …and then make them even smaller! 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.

11. Give yourselves a break – You are probably not a teacher or a heath 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.


What can friends do to support?

1. Be available – Reach out regularly and do what you can to stay connected.

2. Be flexible – Offer options where possible – for instance, “Do you want to talk on WhatsApp or play a game online together?”

3. Be clear – This is especially important when it comes to communicating expectations, wants and needs.

4. Be understanding – Sometimes your friend on the autism spectrum might be struggling with things that you find easy or enjoyable. Take time to listen and be there for them. You don’t need to find any solutions to their discomfort – often, the process of just being there and listening can be enough to help that person through their discomfort.


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