(This post is Part 5 in a series on Understanding Autism & Anxiety)
When you have put as much in place to reduce rational anxiety (caused by threat or unmet needs), you can still have some irrational anxiety.
Irrational anxiety is a know it all! It always thinks it knows best, even when it doesn’t. It is an important protective mechanism as it keeps us safe when we are in life threatening danger, but it also says things that make little sense.
It can stop us from doing things we would really love to do and we would be capable of doing, and also feeds on myths about autism we may have learned e.g. autistic people don’t like change, when it could be about how much a young person wants to make a change and whether they feel in control of that.
For these reasons, we are calling it Shrek anxiety.
In the Shrek movie, Shrek one day bumped into Donkey, who was very happy to see him and wanted to be his friend, but as Shrek had bad experiences with others in the past, he rejected Donkey as he assumed Donkey would be the same.
Over time and A LOT of tension, his perspective changed. His anxiety was 'irrational' and became a barrier to making friends.
But Shrek is stubborn, it took hundreds of fairytale creatures invading his swamp and a fight with a dragon for him to eventually trust Donkey (though it did happen in the end).
Now, imagine Shrek is your anxiety.
“Shrek anxiety” is very real, and feels the same as other types of anxiety. It is normal for “Shrek anxiety” to appear when:
We are doing something new or different
We are unsure about our plans
We have a lot of 'What If?' questions
We have to perform
Something scary is happening
If you see a tiger, Shrek anxiety will tell you you need to escape. If you are going to give a speech to a huge audience, Shrek will appear, especially if the talk means a lot to you! This same Shrek anxiety can also appear when you are doing something which shouldn’t cause anxiety, like trying to walk up the stairs or talk to someone new.
So, some “Shrek anxieties” are ‘irrational’. They make little sense. Your brain tells you that something is scary, even when logically, you know it isn’t. Your survival brain takes control and thinks something bad is going to happen. For example, have you noticed how lots of people are scared of spiders, even though in the UK they are completely harmless? Anxiety tells you they are dangerous, even though they are not.
The irrational anxieties that appear, as we discussed earlier, can be overcome using a 3 part process:
Part 1: Knowing there isn’t actually anything to be scared of
Part 2: Making sure nothing triggers your phobia
Part 3: Taking small steps to prove there is nothing to worry about, at your own pace
Example: Fear of the dark
Part 1: Knowing that most of the time, there is nothing to be scared of in the dark! It is usually perfectly safe to be in the dark. While you know that right now, when worry takes over, it can feel very scary (even though there is nothing to be scared of). Since we know this, we know we can challenge our anxiety.
Part 2: Start with the lights on, so there is nothing to trigger your anxiety.
Part 3: Over time, slowly reduce lights at the young person’s pace, maybe trying:
Using a dimmer switch and turning it down a little bit every day
Starting with full lights, then landing light and lamp, then lamp, then night light
And over time, your fear can reduce.
Make sure the anxiety you are trying to reduce is “irrational”
As we said above, it is normal to experience anxiety in some situations. You SHOULD feel worried if something scary is happening.
If the anxiety is rational (caused by threat or unmet needs), this approach will not work. If you struggle in a busy environment because it is too loud, being sensitive to sound is innate to being autistic for some people, so challenging your anxiety in this way will not make it easier, but can cause sensory overload and trauma.
Your anxiety will be telling you this is dangerous
There is a reason anxiety is called “Shrek anxiety” here. Shrek is stubborn and always thinks he is right, even when he isn’t.
It is helpful to see irrational anxiety as separate to you. Give it a name (we called it Shrek, but it can be anything) and think about what it is saying when you are worried. Sometimes, this person may be telling you to escape for good reason, but sometimes they are talking nonsense, so you should ignore them (or tell them to shut up) and do it anyway! At first, you will feel anxious and scared, but over time you will relax again and you will have proved to your brain a little bit that there isn’t anything to worry about.
Remember, this can be a slow process which needs to be done at your pace. If you are finding it too difficult, you may need to find a smaller step, you may not be ready right now or you need more adjustments so your anxiety is low enough to make progress.
So at this point, let’s dive a little deeper into what you can do:
The first step is having a proper understanding of what anxiety is.
We have shared some key messages that you need to know and do in regards to anxiety, but if you would like to know more or are looking for a more in depth explanation, here are some great sites to look at:
Anxiety is when you are feeling really worried or afraid that something might happen in the future. When you have high levels of anxiety, it is easy (and quite common) to get trapped into ‘the anxiety cycle’, which stops you from doing what you want/ need to do:
We said that you can take “small steps” to challenge your anxiety, but it really isn’t easy! So here is a summary of a process to follow when trying to break out of the anxiety cycle:
1. Expect it
Know that anxiety is normal and everyone experiences anxiety, it just gets too much sometimes.
2. Talk to it
Anxiety is like the ‘know-it-all’ in your life who thinks they are right about something and that you should follow all their advice. Some of what anxiety says is important for keeping you safe and aware, but some of it is rubbish and anxiety is making you worry too much for no reason. When anxiety is talking rubbish, tell it to be quiet or ignore it like you would when you talk to a ‘know-it-all’ in real life.
3. Know what you want
Every human being worries when:
a. We are doing something new or different
b. We are unsure about our plans
c. We have a lot of ‘What If?’ questions
d. We have to perform
e. Something scary is happening
If you really want to do something that involves one of these 5 things, you have to accept worry and anxiety rather than avoiding it, or you will never be able to achieve what you want.
If your anxiety is “irrational”, then the anxiety you feel will reduce over time as you challenge it.
4. Be unsure and uncomfortable on purpose
It is normal to feel worried when you are unsure or uncomfortable. The only way to grow as a person and develop and learn new skills is to feel unsure and uncomfortable, but do it anyway.
5. Bridge back to your successes
When you are worried your brain magically forgets every success you have had in the past. Even if you do not succeed, every attempt at something new is a learning experience. Get into the habit of reminding yourself of times in the past when you have been successful despite being worried, or when mistakes you have made have helped you to learn and improve. It takes practice, but it is incredibly useful once you get used to it! Think about how many times a baby falls over and fails when they are learning how to walk for the first time.
6. Breathe!
When you are feeling really anxious, doing some slow and deep breathing will calm you down. Again, you need to practise doing this when you are calm, so you get into the habit of doing it when you are feeling worried too.
7. Take action
The only way to reduce anxiety is by taking action. It is difficult at first, but the more you challenge your anxiety, the more your brain realises that you don’t need to be as anxious as you are. You can’t get rid of anxiety as it is a part of everyday life, but by doing this you can start to reduce your anxiety to a manageable level.
Here is what this looked like when I was challenging my fear of heights, thinking about theme parks:
1. Expect it:
I know that worry will show up if I think about a ride or go to a theme park. It will tell me about the crash at Alton Towers in 2015 where 16 people were injured, or about how when I am on a ride there is no escape so if something goes wrong, I am doomed! This is nothing new and I will expect it.
2. Talk to it:
There is a 1 in 300,000,000 chance of dying due to a ride every year, I am 30 times more likely to be struck by lightning! I am 100 times more likely to die from food poisoning every year, but I still happily order disgusting food from takeaways with low hygiene ratings, so why the heck should I be scared about a ride?
Shrek, I am not going to follow your orders anymore. Even though I am scared, I am going to handle it and not believe what you say.
3. Know What You Want:
I am absolutely terrified of heights! As a result, I struggle with going up stairs, crossing bridges and having as much fun at theme parks! I really enjoy fast paced rides, but not if they go upwards. I want to be able to go on high and fast rides so I can have more fun and exhilarating experiences, but right now I am way too scared!
4. Be Unsure and Uncomfortable on Purpose:
I am going to feel nervous and scared as I have avoided rides like this for a very long time. But if I can get through that feeling and talk to my worry, then I will be able to show my brain that I can handle this. It’s ok to get nervous. I will start on a smaller ride, and when I get scared of being trapped on the ride with no escape, I will remember how I sat on the Miami ride the whole way through and while it was difficult, I survived and it became a bit easier the next time, as well as do some calm breathing.
5. Bridge Back to Your Successes:
I have been on Miami ride at Heaton Park twice in the last two years, the first time it was horrifying but I survived! The second time I was still really scared and couldn’t open my eyes, but it wasn’t as bad as the first time.
6. Breathe!:
I know how to calm myself down using breathing techniques. That reminds me to use my prefrontal cortex and stops my amygdala from firing off. When I do some deep breathing, I reboot my system and give myself a chance to think and problem solve. The breathing skills help me take a break and remember my plan.
7. Take Action on Your Plan:
I’m stepping into this with a plan! I know it will be difficult at first, but doing this makes it easier over time. Since I really want to enjoy big rides, I am willing to feel uncomfortable along the way, and I know what will help me to reach this goal.
A Note on Medication
Medication can play an important role in overcoming anxiety:
Medication can “take the edge off”, but it doesn’t make anxiety go away and doesn’t deal with the cause of anxiety. It isn’t a replacement for making environmental adjustments, but makes things a little easier to do or try:
“X has had play therapy, equine therapy and EMDR, but none of those would have been accessible without medication.”
“It was probably the best decision we made as it saved the boy we knew. It isn't a cure all, but it is definitely the foundation he needed to be able to work with the correct support.”
“Medication is great for when you know what the next step is, but you can't quite get there (e.g. therapy, lowering anxiety to get the bus, being able to pace your thinking to take care of yourself better) or, when you just can't do it anymore and something has gotta give.”
An environment may never be “perfect”:
Unfortunately, with some anxieties or in some environments, there will always be triggers.
For example, if someone has a phobia of the expectation to speak, which can be one of the reasons behind situational/ selective mutism, this is very difficult, as people tend to expect you to speak a lot! Any expectation to speak can then make your anxiety worse. Medication can make this more manageable.
It isn’t always possible to remove triggers for anxiety:
In some cases, you can be trapped in an anxiety cycle that it isn’t possible to escape from. Someone with OCD may have anxiety triggered by thoughts, and if these thoughts become too intense, medication may be the only way to make them easier to deal with in the short term.
Sometimes, medication may be the only option:
“Medication can ‘lift the fog’ to a point where I can function again when I am struggling to cope. Often people need this boost to get them out of a really difficult place that isn’t accessible without medication.”
“Medication was life changing for X. He was so anxious that his world had shrunken to being just at home and unable to make it through any of the activities he used to love to do. He was so distressed prior to taking the medication.”
“When he started taking it he started to find things funny again, he visibly relaxed after a few weeks and within 2 months he was laughing, enjoying life and able to do some of the things that he wanted to again. It didn’t fix his anxiety but it did help give him a step up.”
Medication should not be seen as a fix-all though - it should be seen as part of a toolbox:
“X’s SSRI medication was most useful in the first 6 months - it would have been better if we could have had mental health therapeutic support for him during this time but there wasn’t anything to support anxious autistic 10 year olds from our CAMHS.”
Some considerations when it comes to medication
Listening is key:
Medication can be a long process of trial and error, where the wrong dose or wrong medication can have a negative impact. It is important that the person taking medication is listened to when looking at medication, doses and discussing any positives and potential side effects.
There are a variety of anxiety medications which can be completely different:
Medication can vary in terms of possible side effects they have and the clinical monitoring that is required. A low dose of melatonin may not need the same level of monitoring as an antipsychotic medication. One anxiety medication may work very well for someone while another could have very difficult side effects. The impact of medication also varies from person to person. Medication that is available may also be very different depending on the age of a young person and whether they are under the care of a psychiatrist or CAMHS.
Medication should be a personal choice:
People often have very strong opinions regarding medication and there is a lot of stigma attached to it. When considering medication, it is really helpful to focus less on value judgements and more on lived experience and the views of trained medical professionals. Families report feelings of guilt and shame when it comes to taking medication, but people report a very high positive impact when they get it right.
“I was very anxious about the idea of trying medication at first, but it was the best decision I ever made.”
When considering medication, a young person’s views are the most important. You should have open, honest conversations with young people about medication, the impact it could have and possible side effects. It is also really important to ensure their feedback is taken seriously when they are taking medication.
Medication should be looked at through a neurodiversity affirming lens:
The focus of medication should not be to “fix autistic traits”, normalisation or compliance. Acceptance and understanding should be the focus here, rather than medication.
“As a parent it's easy to feel you have let your child down by resorting to 'drugging' them but it's no different than giving them antibiotics if they've an infection. The stigma around medicating for mental health is lifting and it's not a failure or saying your child is broken, it's acknowledging that we all need help sometimes. But please don't think it's going to be a wonder drug. It can take time and trial and error to find the correct dosage and even then the anxiety will still be there, just dulled enough to deal with. Ensure medication is followed up by support.”