Anxiety and Autism – Children:

Unfamiliarity:

Getting used to new things can take some time as it is a change to one’s environment, routine or plan. It’s difficult to know what to expect.

Tips for managing unfamiliarity:

• If you are going into an unfamiliar situation such as going on vacation or starting in a new school, it can help to bring something with you that is familiar and comforting to the autistic child. This might be certain clothing items, a stuffed animal, foods they like, or for some it may be a device such as a tablet or phone.

Uncertainty:

Uncertainty can impact several aspects of life. Many autistic people need a plan, or struggle with not knowing things. For some this can be anxiety around things like not knowing what’s on the other side of a door or what’s going to happen in a movie.

Below are some more examples:

• Knowing what they’re going to eat; Is it something they like? Is it something that causes them distress due to sensory issues? Is there going to be another option?
• The time that they’re meeting someone; When people give vague times such as ‘sometime in the afternoon’ this can be quite stressful as it means the autistic person doesn’t know when the person will arrive and it makes it hard to start or focus on other things.
• People running late; this can result in worrying they got the time wrong or getting stressed if they had a plan that required the person to arrive on time, for example if they had a booking for an activity or event.
• Not knowing the plan for the day; this can make it really difficult to regulate their emotions as they may not know when a particular activity will end, how long they have to tolerate certain things or if they’re going to be pulled away from something they’re enjoying.
• Not knowing how long something is going to happen, for example how long guests are going to be in the house or how long they’re going to be out. For an autistic child this can mean that if they are getting stressed or overstimulated, they have no idea when it’s going to end.

Tips for managing uncertainty:

• Reducing uncertainty can significantly reduce stress and anxiety. Creating plans for the day, including meal plans, can be helpful. How detailed these plans need to be depends on the autistic person and to what degree uncertainty is an issue for them. However, be aware that sometimes when a plan is made, it can be very stressful to deviate from the plan at all. So, it’s usually better not to put anything on the plan that has a high likelihood of changing.

Challenges in neurotypical social situations:

Uncertainty also comes into social situations and may cause anxiety around not knowing what other people are thinking or feeling, and worrying they might be interpreting people incorrectly. This is especially the case if they’ve repeatedly gotten into trouble and not known why, or frequently been misunderstood, misinterpreted social situations, had miscommunications or been told they’re getting things wrong. Autistic people may feel also anxious about not fitting in or feeling like they don’t belong.

Below are some more examples:

• • What if I’ve misunderstood the dress code and end up being the odd one out? This is particularly the case if there are dress up days at school or parties.
  • Did they think I wasn’t listening because I didn’t make eye contact?
  • Did I talk too long about that topic? Were they actually interested or were they bored?
  • Am I coming across as awkward? Am I staring too much? Have I made enough eye contact? Am I fidgeting too much? Am I smiling at the wrong time? I don’t want to be weird.

Tips for managing neurotypical social situations:

• • • Have a safe person that the autistic person can get reassurance from or ask for clarification
    • Create visuals that explain the expectations or norms. It’s important that this is done in a way that does not expect the autistic child to be less autistic but rather explains how things work and what to expect. For example, you might explain that when people ask, ‘how are you?’, they usually aren’t really asking for a proper answer. It’s more of a greeting or form of polite small talk. But it is then up to the autistic person if they wish to change how they respond to that in the future. You might explain things like where they should put their bag when they get to school, or why they have a uniform.
    • For schools: provide professional development for teachers on neurodivergence. Having a good understanding of neurodivergence will give teachers the necessary tools to support the learning environment of neurodivergent students but also increase teachers’ ability to be more understanding and open-minded for all students.

Gift giving and reactions:

Receiving gifts may be a source of anxiety for some autistic people as it is a social situation where there is typically some kind of reaction that is expected from the giver. They’re often expected to pretend to like the gift even if they don’t and they need to look excited or happy or show the right emotion. This can be challenging for autistic people who may express emotion differently and may be more inclined to be honest and upfront. Even when they genuinely love the gift, the way that presents isn’t always interpreted correctly by the gift giver. Because of this, getting the reaction right can be daunting for an autistic person, especially when it’s in front of several people.

Tips for managing gift giving:

• • • It’s okay to let them open the gifts when they’re alone, it doesn’t have to be a show.

Communication differences:

As with social situations, autistic people often find themselves getting into trouble or miscommunications due to differences in how they communicate and interpret language. This can cause a lot of anxiety as it’s something that can be very difficult to avoid when people are not particularly understanding of autism. Below are some examples:

• • • Did they think I was too blunt or rude?
    • Did they think I was insulting them when I told them that they had split ends in their hair?
    • Are they actually asking how I am or are they just engaging in polite small talk?
    • They asked me to bring them a glass, did they want something in the glass? I’m getting water but what if they have a drink with them that they want to pour in the glass and they don’t want water? What if I bring them an empty glass and look stupid because they don’t have anything to put in it?
    • When an autistic person mimics another person’s tone, particularly a person in authority, they can get into trouble as it can be perceived as raising their voice, talking-back, or disrespecting the authority figure. The problem is that, often, the autistic person isn’t intentionally mimicking the other person’s tone and may not even be aware they are doing it.

Tips for managing communication differences:

• • • Have a safe person the child can get reassurance from or ask for clarification
    • Take what the autistic person is saying at face value. There doesn’t always need to be underlying meaning to what people are saying.
    • If you didn’t say something out loud, don’t expect the autistic person to know it was implied.
    • Kindly explain how you’re interpreting things and why you’re interpreting them the way you are. It’s stressful getting in trouble and not being given an explanation as to what we got wrong because the person believes that we should know what we did wrong, when in reality it was a miscommunication.
    • Create visuals or FAQ documents that explain the expectations or norms. But again, this needs to be done in a way that doesn’t expect the autistic person to be less autistic. The work should not fall solely on the autistic person to adjust their communication to avoid miscommunications. A little bit of understanding can go a very long way with autistic communication.
    • For schools: provide professional development for teachers on neurodivergence. Having a good understanding of neurodivergence will give teachers the necessary tools to support the learning environment of neurodivergent students but also increase teachers’ ability to be more understanding and open-minded for all students.

Bullying:

Autistic people are vulnerable to bullying and may not feel like they can reach out for support. They may feel like they are overreacting, or if they report the bullying, they might be further isolated or ostracised. They may worry or feel that they’ll be blamed or told it’s their own fault that they’re being treated the way they are and perhaps if they ‘fit in’ more it would be different. They may also not realise that the way they’re being treated isn’t okay. This can cause significant anxiety and can be incredibly isolating.

Tips for managing bullying:

• • • Expecting the autistic person to hide their autistic traits or change who they are to fit in more, is not a solution to bullying. It simply teaches the autistic person that who they are is not okay and makes the adult another one of their bullies. For example, an autistic person shouldn’t be told to make more eye contact, stim less, play pretend instead of lining their toys up, to name a few.

Difficulty identifying or regulating emotions:

Having a hard time identifying or describing one’s emotions (also known as alexithymia), paired with poor emotional regulation can make it difficult to manage or prevent meltdowns. This can mean that sometimes it feels like meltdowns and shutdowns come out of nowhere. This can cause anxiety as it means the autistic person can’t really know if or when it’s going to happen.

Tips for managing emotional regulation:

• • • Develop a vocabulary of emotions. You may need to use unconventional signals to identify different emotions. Relying on smiling and crying could direct the autistic person the wrong way if they struggle to identify how they are feeling, and if they don’t express emotion in the same way that neurotypical people might. So, you may notice that when they are happy they might be more inclined to think about their favourite activity for example. And perhaps when they’re sad they want to stay curled up in bed.
    • Take notice of their different behaviours, ask them what they felt in their body at the time, and what they were thinking about. Then use this to start labelling what their different emotions look like.
    • You can also try reading How do I Feel? By Rebekah Lipp. This book also comes in a pack of cards and lists different emotions and what they might feel like.

Executive dysfunction:

Executive dysfunction can cause anxiety in multiple ways. Executive functioning is your ability to start, plan, prioritise and stay on task. Below are some of the ways that executive dysfunction may cause anxiety:

• • • With executive dysfunction, tasks, or parts/steps of tasks, all end up having equal priority. This can mean that it feels like there are an overwhelming number of things that need to be done all at the same time and it can be hard to know where to start. For example, if you need to clean your room that might mean needing to pick up rubbish, but the bin is full so you need to take that out too.
    • You need to make your bed but there’s homework, stationary, a laptop and laundry on it as well so that needs to be dealt with. You need to vacuum the floor but to do that you need to pick up anything else that’s on the floor. There are also some dishes that you need to take to the kitchen and put in the dishwasher, but the dishwasher is full so you’re going to have to empty that as well. When your brain struggles to put steps in order, all of these small pieces add up and it becomes very stressful to start any task.
    • The child may feel like they need their space to be tidy but they can’t get it tidy due to executive functioning challenges so now the mess is causing anxiety. The child may worry that people think they are just being lazy.

Tips for managing executive dysfunction:

• • • Have a body double: having a body double simply means having someone else exist in the same space while you get a chore or task done. Sometimes it helps if the body double is doing a similar task, or checking in every so often; sometimes it’s enough to just have another person in the room
    • Help run them through each task. You don’t necessarily need to help do things for them, but helping keep them on track and in order in terms of which step they’re meant to be doing can be helpful.
    • Write out a checklist of what you need to do
    • Create step by step visual instructions:
    • Goblin tools: Goblin tools is a website that will break down tasks in to steps https://goblin.tools/
    • Set reminders on their phone or device.

Being in waiting mode:

Being in waiting mode is when you know you have a task or appointment coming up and you’re waiting for that time to approach. For many neurodivergent people, starting any other task while in waiting mode can be very difficult and anxiety provoking. Below are some reasons why:

• • • • What if I have to stop mid-task to attend my other commitment.
      • What if I get distracted and miss my commitment.
      • I can’t focus until I’ve finished my commitment, but I’m supposed to be getting other things done and so now I’m going to get into trouble or have a huge amount to get through after my commitment.
      • If the task is something like remembering to get food out of the oven, the anxiety might be that you could forget and end up causing a fire or burning your food.
      • If the commitment is meeting up with someone, the anxiety might be that you could be late, and the person might think badly of you.

Tips for managing ‘waiting mode’:

• • • • Book appointments or meetings at the start of the day to avoid being in waiting mode all day.
      • Come up with a list of time-limited tasks that can definitely be done without running into the task or appointment. Some examples might be seeing how many things you can pick up and put away in 15 minutes (with a timer on); or watching a TV episode or video that is definitely 20 minutes long.

Sensory processing differences:

Many autistic people have differences in their sensory perception. Often that can mean being hypersensitive to stimuli, for example being able to hear the electricity of lights and power outlets, feeling almost suffocated by strong smells, or being more sensitive to certain fabrics. It can also mean needing more input such as movement or pressure in order to function or regulate oneself.

This can cause anxiety for a number of reasons:

• • • • Am I going to have access to the tools I need to cope (such as headphones or active seating)?
      • Are people going to think I’m weird for needing to move around or stim?
      • Are people going to think I’m not paying attention because I’m doodling or fidgeting
      • I can’t pay attention because there’s too much noise and light and smells and my clothes are hurting me but I’ll get into trouble or be seen as rude if I walk out
      • What if I can’t communicate when I get overstimulated so I can’t explain why I’m suddenly unable to cope?
      • How long am I going to have to tolerate it?
      • Am I going to have enough down time afterwards?
      • School can be a sensory nightmare that sometimes doesn’t understand or allow the necessary accommodations and it can be easy for a child to get into trouble when they suddenly become so overstimulated that they have a meltdown or simply cannot cope or focus anymore.

Tips for managing sensory processing differences:

• • • • Create a sensory diet as part of your routine. This means allowing time before or after periods that you know might be overstimulating to decompress or allowing time for getting sensory input prior to going into a situation where you know you will need to be quiet or still.
      • Use headphones or earplugs to manage noise levels
      • Use active seating
      • Have a quiet space

Lack of access to special interests or comfort items:

Autistic people may rely on particular objects or interests as means of regulating themselves. Being denied access to these things can be a significant source of anxiety.

Pathological Demand Avoidance:

Some autistic people have an autism profile known as Pathological Demand Avoidance. In short this is an anxiety driven inability to comply with demands. Individuals with PDA may feel significant stress just at the idea of potential demands. For more information on PDA: https://autismnz.org.nz/wp-content/uploads/2024/07/PDA- Pathological-Demand-Avoidance.pdf

How anxiety might present:

Below is a list of some of the ways anxiety may present, but it is important to note that many of these traits overlap with autism and/or ADHD and may show up in children who are not experiencing anxiety. When a combination of these traits appear or cause distress, it might be worth considering looking into anxiety:

• • • • Being rigid in need for routines, familiarity and plans
      • Asking a lot of questions or needing a lot of information to prepare for new or different environments or situations
      • Indecision
      • Seeking reassurance
      • Self-doubt
      • Shutting down
      • Avoidance
      • Overthinking/ruminating
      • Running away/eloping
      • Hyperfixating
      • Scripting: autistic people may spend a significant amount of time scripting and rehearsing conversations or scenarios. This may also include practicing facial expressions and body language.
      • Meltdowns
      • Panic attacks
      • Flapping/aggressive stimming
      • Increased heartrate
      • rapid breathing
      • sweating
      • tiredness
      • shakiness
      • racing thoughts
      • chest pain or tightness
      • hot or cold flushes
      • Proprioceptive input/pressure; use weighted blankets, weighted stuffed animals, or tight hugs
      • Use something cold: get outside, put ice on the back of their neck, have them take a cold shower, or eat some ice cream or a popsicle Have them take some slow breaths
      • Go sit somewhere dark and quiet and less overwhelming
      • Get some exercise, go for a run, do some jumping jacks, dance Medication
      • Talking therapy
      • Make sure they’re getting enough sleep
      • Have a bath or shower
      • Have them think about something they’re really interested in or engage in an activity they really enjoy.
      • Listen to music
      • Get them to write their thoughts down. Get them out so they stop going round in circles.

Remember that anxiety is often irrational. Reassure them that everything is okay and remind them to be kind to themself.

More information can be found at: https://www.autistica.org.uk/what-is-autism/anxiety-and-autism