(This post is Part 2 of a series on Autism and Anxiety)
Do the young people you support understand themselves? This is the first step to understanding their anxiety. Often young people are diagnosed as autistic, ADHD and more, but it is rare that what this means is actually explained to them. This can have quite a negative impact on young people:
“When I was diagnosed as autistic I was angry all the time. Because I didn’t understand, I thought I was going to be angry for the rest of my life.”- Spectrum Gaming member
“Autism is the reason for everything that is wrong with my life.”- Spectum Gaming member
Autism isn’t a standalone diagnosis, but it is often treated as such. This means that individual elements such as anxiety or depression aren’t dealt with properly or even at all. It may just be assumed that it is unchangeable and not worth addressing.
Because people are diagnosed when they are struggling, they often also have traits of anxiety, depression, trauma and more. In addition to the detrimental impact this has on their wellbeing, this can lead to shame, hatred and embarrassment towards their autism diagnosis. They are often led to believe that the way they are feeling is down to autism, not trauma from being unsupported for so long.
One of the most important things to support young people is distinguishing what autism is and what it isn’t:
If people feel all of their current difficulties are unchangeable and part of autism, they may not realise it’s within their power to challenge their anxiety.
Just distinguishing the difference can help a young person have a huge increase in wellbeing, as they will understand themselves more.
Other people often misunderstand what autism is and how it works. It is, therefore, really powerful to help autistic people understand themselves, as they will be able to better advocate for themselves and reduce their risk of experiencing harm.
The same process applies with anxiety. It is really important to explain to young people how anxiety works and how to overcome it. This is why this guide is written in a young person friendly way; both adults and young people can read and benefit from this.
When it comes to understanding your anxiety, we believe it is really important to split anxieties into two categories:
We need to split them into two categories because a different approach is needed for each! Understanding the underlying reason behind anxiety means you know what needs to be done next.
Rational Anxiety - Caused by Threats or Unmet Needs
For many autistic people, we experience harm in situations where the majority don’t. If our hearing is sensitive, no amount of willpower or exposure therapy is going to make it less sensitive.
It is something we need to recognise won’t change, and it’s far healthier to take steps to avoid or reduce the harm than try to ‘get used to it’. We will always be anxious in spaces that are too loud for us because those spaces are harmful to our well-being.
The needs that we have due to being autistic aren’t changeable, but we CAN change from trying to struggle on in silence, to focusing on meeting those needs and reducing our anxiety that way.
If anxiety is related to a genuine threat, this means that “challenging the anxiety” through a small steps programme will not be beneficial. In fact, it can make the anxiety worse:
“Whenever I was in school, I struggled SO much. It was loud and busy, but the worst thing was that everyone else seemed ok with this while I struggled. Because of this, I felt like I was in the wrong and I had to learn to overcome it. I followed school’s plan of trying to get used to it a bit at a time, but it didn’t work. Instead it made me worse until I couldn’t even think about school anymore. I trusted the adults but I don’t think I will ever again.”- Spectrum Gaming member
If anxiety is rational, there are two things that can help:
More understanding
Simply understanding and accepting why you feel the anxiety can really help. What is the harm we are experiencing that our brain is trying to protect us from? Often we do not get this opportunity, as people do not usually explain what autism and other conditions mean for you practically.
More support or a better environment
If your anxiety is rational, it means you need better support or a better environment that meets your needs. Once you are in an environment that is less harmful to you or you have some practical tools to make it easier, anxiety will decrease.
In order to challenge anxiety as a result of unchangeable needs, it is really helpful to understand autism (and other unchangeable things) so that you get the support you need.
Useful resources/ links:
Irrational Anxiety - You can change things when you are ready
If anxiety is irrational, it means that you can take steps to overcome it or reduce its impact over time.
Reduce anxiety triggers
Things that trigger these anxieties can make them worse. Throwing a spider at someone who has a spider phobia will make their phobia worse! In the same way, challenging any anxiety before you are ready to do so can intensify it.
Ensure your needs are met
The more anxious you are in general, the more difficult it will be to overcome irrational anxieties. If you feel dysregulated, anxious or stressed before you begin to challenge your anxiety, a small step to challenge it will feel huge.
Small Steps
Remove pressure or anxiety triggers, then a young person can then take small steps to challenge anxiety at their own pace. It is REALLY important they can do it at a pace that works for them, as too much of a push can trigger a survival response, which will make the anxiety more intense.
Going at their pace includes being able to initiate progress at their own pace too. Overcoming anxiety is a huge challenge which includes bad days and setbacks. Asking how things are going or making suggestions (unless requested by a young person or this is their preference) can make small steps more difficult.
Case study: Andy
This is an example of how this four step process to challenging anxiety may look - we will dig deeper into it throughout this guide!
I used to be absolutely terrified of heights! As a result, I struggled with going up stairs, crossing bridges and having much fun at theme parks! I really enjoy fast paced rides, but not if they go upwards. I wanted to be able to go on high and fast rides so I could have more fun and exhilarating experiences, but I used to be too scared!
Once I signed up for a music course and I was REALLY excited, but when I got there, the building had stairs with gaps in between them.
I tried to go up them but, froze after a few steps. Anxiety was telling me that if I went any further I would fall through the gaps and die! Someone then tried to pressure me up the stairs and I got so worried I ran away and missed the course. From this moment, I was determined I would overcome my fear of heights!
Understanding my anxiety
When I was calm and relaxed, I spent some time researching my fear of heights so, logically I knew it made no sense. For example, I used to think that if I went on a ride at a theme park the ride would break! From my research, I saw that 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?
I knew that worry would show up if I thought about a ride or went to a theme park. It would 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! But, it was anxiety that was telling me these things and making me believe them in the moment. When I was calm and relaxed, I knew there was no real danger.
Reduce anxiety triggers
After not making it up the stairs and running away, my fear of heights got worse! If I was trying to do more than anxiety would let me, it made overcoming my fear more difficult, so I started with not doing anything that triggered my anxiety. I walked around bridges (even if the walk was A LOT longer), didn’t go very high in buildings and avoided theme parks - so that I felt safe and comfortable.
Meeting needs
When I decided to overcome my fear of heights, I was ready to do it. I didn’t have too many other pressures (work was going well and I didn’t have too many commitments) so, I had spare “brain power” to think about and try to overcome my fear of heights. If I had tried a year earlier when I was at university, I wouldn’t have been able to do it as I was very stressed worrying about completing assignments and revising for exams!
Small steps
The next step was challenging my anxiety a little bit at a time to prove there was nothing to be scared of. This started with a twirly staircase. It made me really anxious, but there were no gaps in the stairs and no windows so it felt manageable at the time. I went to the location I had found, and walked up and down the stairs for around an hour. At first I was VERY scared, but over time it became a lot easier, showing my fear was decreasing.
Then, I moved on to a small bridge. One which was a bit high, but where I would be ok if I fell. I walked back and forth across the bridge, REALLY scared at first, until I didn’t feel as scared anymore.
Then each time, I moved onto a slightly bigger step:
A longer bridge over a motorway
STAIRS WITH GAPS IN BETWEEN THEM (I could finally do it!)
Going on a climbing wall
Going up and down in a transparent lift (in the Manchester Arndale)
These steps were all chosen by me, and done at my own pace. It is key here to do the steps at your own pace. Too big of a step can trigger your anxiety and increase your fear. If this happens, that’s ok! It just means that step was too big, and a smaller one needs to be picked next time.
After around a year of challenging my fear of heights (it can take a different amount of time to overcome anxiety depending on the person, how important it is to you and the environment), I felt my fear of heights was no longer a barrier so, I then went to Go Ape (February 2022), and had an amazing experience! I still have a fear of falling (which should be expected), but no longer have a huge irrational fear of heights.
I haven’t been to a big theme park yet, but have been on quite a few rides!
It is important to recognise here that challenging anxiety is incredibly difficult.
Young people may not be able to challenge the anxiety right now so, best practice is to focus on:
Reducing anxiety triggers.
Meeting needs.
In essence, anxiety you can change should be treated in the same way as anxiety you can’t change. The only differences are:
Making sure young people know they can overcome it when they feel ready to.
Focusing on acceptance for now, then the young person may be able to take steps to overcome it when they feel ready. They may need support with this or may do it independently.
The distinction isn’t necessary right now, but it is later on.
Why?
If rational anxiety is still an issue, you may need different adjustments or could just be in the wrong environment
Irrational anxiety still needs adjustments at first, but when you are ready you can challenge it and overcome it over time
The only way to overcome irrational anxiety is to challenge it, proving to your anxiety that there isn’t anything to worry about, but to be able to challenge your phobia, your reason to face the anxiety must outweigh the anxiety caused by it.
There are a few pieces of information it is really helpful for young people to know in regards to this:
Everyone has things they would like to try, but don’t because they feel worried about doing them. Naming what the things are can be good. What are your goals? What is getting in the way? This helps to work out if there is anything you would like to work on.
In the short term, it is easier to avoid your anxiety and not take steps to reduce it... but, avoiding it means you will never find it easier to do. This can get in the way of things you would like to do in the future.
The sooner you start to challenge it, the easier it is as anxiety will be less entrenched.
It is never too late to challenge irrational anxiety, but it is always difficult and takes time, care and patience.
It is helpful to let someone you trust know you really want to do this; it is easier when you aren’t doing it alone.
It is important to find the root cause of anxiety to determine whether it is irrational or not: For example, anxiety around heights could be irrational anxiety, but it could also be as a result of sensory differences. For example:
An Autistic person who is sensitive to their sense of balance could by hyperaware of their control, so heights can increase levels of anxiety.
An autistic person who has lower body awareness may struggle at height due to being unsure of where there body is in relation to the space around them, meaning they could have a rational worry about falling in spaces where others may not. Taking small steps to challenge this rather than reducing threats or meeting needs is likely to make anxiety worse.
