Alarm Bells

Well done with the weight loss.

I too have had a long term battle with extreme anxiety. Standard treatments and therapies (such as CBT and mindfulness) did not help and actually made it much worse in some cases. Assumptions were made about what was causing the anxiety which were totally wrong.

A game changer in helping me discover what was behind it was the work of Dr Luke Beardon and his book 'Avoiding Anxiety in Autistic Adults'. It is so helpful to realise that very often it is not you that needs to change but the environment.

https://www.youtube.com/watch?v=vueAASgTz8s

Autonomistic said:

Assumptions were made about what was causing the anxiety which were totally wrong.

That is interesting. If the correct assumptions were made then do you think the approaches would have been any more successful?

Autonomistic said:

It is so helpful to realise that very often it is not you that needs to change but the environment.

I'll do some reading on this as it sounds fascinating.

How do you manage for situations where the environment cannot be changed? I imagine this is is the majority of situations outside of home.

Iain said:

If the correct assumptions were made then do you think the approaches would have been any more successful?

Very possibly. Existing therapies tend to be neuro-normative and ableist. In order for a therapy to be effective both the autistic person and their therapist need to have a good understanding of how being autistic affects them and what their sensory profile is. Only then can they identify what is irrational anxiety and what isn't, what is achievable and what isn't. 

CBT works on the assumption that fears are irrational, that the anxiety must be caused by thoughts which are faulty in some way. It works on the assumption that repeated exposure to the feared situation will reduce the anxiety, as the person gradually realises that their fears are irrational. Therefore CBT is only going to work IF the fears are irrational. 

However in the case of an autistic person the fears are very often rational. Sensory overload will lead the person to fear and avoid that situation. Sending an autistic person back into that same environment without any mitigating factors or safety behaviours is just going to increase their fears rather than reduce them. 

Sadly when an autistic person is given standard CBT therapy it can all too often leave them feeling worse about themselves than before. Being told that our fears are irrational is an invalidation of how we experience the world. The sense of failure, that we cannot do things that others can, increases.

In another recent discussion DeSpereaux has explained it better than I can:

"Autists can have psychological-issues, but they need to be considered from an autistic-perspective and proactively. Usually therapists take a session or two to gather insights, then they disregard those insights and push a standard model, and say that people need to ‘just do it’. This doesn’t work for autists, because you can’t wish neurodivergence away with a can-do attitude, as it leads to overload. Which they learn to fear and avoid."

Some recent research study on CBT therapy for social anxiety in autistic people found that the fears in many cases were not irrational as they were assumed to be and the majority of autistic adult participants had found CBT to be actively unhelpful.

https://www.youtube.com/watch?v=QN37lT-YlJg

In terms of mindfulness I am not dismissing that as a concept at all. In my case I think I was already very mindful before I even started that 12 week mindfulness course. I spent most of it very bemused about the assumption that most people seemed to be lost in their heads and not mindfully aware of their surroundings. My problem was the opposite, in that I was too aware most of the time and became easily overwhelmed by everything all at once.

Mindfulness exercises usually focus on breathing, which for an autistic person such as myself with hypersensitive interoception, can become overwhelming in itself. I could not get through the 50 minute 'body scan' without experiencing panic due to internal sensory overload, yet other course participants would just fall asleep. I practiced every day for the full course duration but it never got any easier.

Like with CBT in order for mindfulness therapy to be effective it has to be autism informed and suitably adapted.

https://www.thearticulateautistic.com/why-the-practice-of-mindfulness-might-backfire-on-autistic-people/

https://www.bbc.com/worklife/article/20210202-how-mindfulness-can-blunt-your-feelings-and-spike-anxiety

Iain said:

How do you manage for situations where the environment cannot be changed? I imagine this is is the majority of situations outside of home.

The environment can almost always be changed in some way if the people concerned are sufficiently willing to do so. It may be in terms of reasonable adjustments in the workplace or elsewhere.

For example anxiety about phone calls that so many autists seem to suffer from is based upon rational reasons such as auditory processing difficulties. We should not be expected to repeatedly force ourselves to endure these, with every bad experience reinforcing and increasing the fears. They're never going to get any easier with repetition. Instead organisations (eg GPs) should be offering alternative methods of communication that works for us.

There are things we can do to help ourselves, such as earplugs, tinted lenses etc. Understanding our limits and retreating to a safe space before we reach the point of overload. Of course that 'safe space' has to be made accessible to us. 

Another thing is to accept that sometimes avoidance is the best strategy. Indeed your reply above suggests it as a strategy in certain situations. Existing standard therapies almost always wrongly assume that avoidance is a maladaptive coping strategy which will make anxiety worse. For years I wrongly believed that if I repeatedly forced myself to endure social situations it would get easier and the anxiety would reduce. It didn't.

Iain said:

If the correct assumptions were made then do you think the approaches would have been any more successful?

Very possibly. Existing therapies tend to be neuro-normative and ableist. In order for a therapy to be effective both the autistic person and their therapist need to have a good understanding of how being autistic affects them and what their sensory profile is. Only then can they identify what is irrational anxiety and what isn't, what is achievable and what isn't. 

CBT works on the assumption that fears are irrational, that the anxiety must be caused by thoughts which are faulty in some way. It works on the assumption that repeated exposure to the feared situation will reduce the anxiety, as the person gradually realises that their fears are irrational. Therefore CBT is only going to work IF the fears are irrational. 

However in the case of an autistic person the fears are very often rational. Sensory overload will lead the person to fear and avoid that situation. Sending an autistic person back into that same environment without any mitigating factors or safety behaviours is just going to increase their fears rather than reduce them. 

Sadly when an autistic person is given standard CBT therapy it can all too often leave them feeling worse about themselves than before. Being told that our fears are irrational is an invalidation of how we experience the world. The sense of failure, that we cannot do things that others can, increases.

In another recent discussion DeSpereaux has explained it better than I can:

"Autists can have psychological-issues, but they need to be considered from an autistic-perspective and proactively. Usually therapists take a session or two to gather insights, then they disregard those insights and push a standard model, and say that people need to ‘just do it’. This doesn’t work for autists, because you can’t wish neurodivergence away with a can-do attitude, as it leads to overload. Which they learn to fear and avoid."

Some recent research study on CBT therapy for social anxiety in autistic people found that the fears in many cases were not irrational as they were assumed to be and the majority of autistic adult participants had found CBT to be actively unhelpful.

https://www.youtube.com/watch?v=QN37lT-YlJg

In terms of mindfulness I am not dismissing that as a concept at all. In my case I think I was already very mindful before I even started that 12 week mindfulness course. I spent most of it very bemused about the assumption that most people seemed to be lost in their heads and not mindfully aware of their surroundings. My problem was the opposite, in that I was too aware most of the time and became easily overwhelmed by everything all at once.

Mindfulness exercises usually focus on breathing, which for an autistic person such as myself with hypersensitive interoception, can become overwhelming in itself. I could not get through the 50 minute 'body scan' without experiencing panic due to internal sensory overload, yet other course participants would just fall asleep. I practiced every day for the full course duration but it never got any easier.

Like with CBT in order for mindfulness therapy to be effective it has to be autism informed and suitably adapted.

https://www.thearticulateautistic.com/why-the-practice-of-mindfulness-might-backfire-on-autistic-people/

https://www.bbc.com/worklife/article/20210202-how-mindfulness-can-blunt-your-feelings-and-spike-anxiety

Iain said:

How do you manage for situations where the environment cannot be changed? I imagine this is is the majority of situations outside of home.

The environment can almost always be changed in some way if the people concerned are sufficiently willing to do so. It may be in terms of reasonable adjustments in the workplace or elsewhere.

For example anxiety about phone calls that so many autists seem to suffer from is based upon rational reasons such as auditory processing difficulties. We should not be expected to repeatedly force ourselves to endure these, with every bad experience reinforcing and increasing the fears. They're never going to get any easier with repetition. Instead organisations (eg GPs) should be offering alternative methods of communication that works for us.

There are things we can do to help ourselves, such as earplugs, tinted lenses etc. Understanding our limits and retreating to a safe space before we reach the point of overload. Of course that 'safe space' has to be made accessible to us. 

Another thing is to accept that sometimes avoidance is the best strategy. Indeed your reply above suggests it as a strategy in certain situations. Existing standard therapies almost always wrongly assume that avoidance is a maladaptive coping strategy which will make anxiety worse. For years I wrongly believed that if I repeatedly forced myself to endure social situations it would get easier and the anxiety would reduce. It didn't.

Iain said:

Thanks for that well reasoned reply. It does make for very useful reading.

The feedback document document for that study I mentioned is also worth reading, as it covers some of the reasons why autistic people tend to be anxious and why existing treatments only help a very small proportion of cases.

https://www.autistica.org.uk/downloads/files/Social-Anxiety-Study-Feedback-to-participants.pdf?

I didn't take part personally but I found one of the comments in that document so relevant I could almost have written it myself:

“Socialising is not something that I have ever experienced any benefits from. Though other people insist that it makes them feel good, I don't experience any benefits. Socialising is not accessible for me. I have auditory processing disorder, so I cannot understand what people are saying. If they are talking on the phone or are wearing a mask, or any other way that I can't see their mouth moving, then I cannot understand anything. If I can see their mouth moving, I can guess a few of the words and guess the rest from context (I am often wrong). This requires a lot of focus and mental effort. Then there are the hints, facial expressions, body language etc. All of which I cannot interpret no matter how much I study. I also cannot effectively communicate via speech. If I am expected to speak, in order to be able to say anything I either have to have a social script extensively prepared and practiced, or I have to try to repeat words they said to answer questions."

Iain said:

For the social situation exposure you mention above, what were you using to control the anxiety?

Looking back it was mainly a lot of scripting and masking, observing and copying others. I endured a huge amount of physical anxiety symptoms, would regularly throw up and that was without alcohol! People used to tell me to try alcohol and it would get easier. I did on occasions, copious amounts, but it didn't make it any easier.

I never got any enjoyment out of social situations. I got a lot of physical anxiety, stress, alienation, overwhelm and exhaustion. I stopped forcing myself into social situations long before I knew I was autistic. I subsequently became a lot happier in hermit mode, although I realise that doesn't suit every autistic person

Iain said:

This builds confidence which reinforced by mindfulness allows me to engage in social situations that would have paralised me previously (eg public speaking, running project meetings with dozens of people present or dealing with conflict resolution situations.

The idea that an autistic person builds confidence socially and is then able to tackle things like public speaking seems an alien one to me, more in line with the neurotypical style of thinking on anxiety. Another invalid assumption I have encountered before. Public speaking can be significantly easier than socialising for autistic people. The rules and expectations are clear and the communication is one way.

As part of my work I was required to do public speaking at conferences on occasions. I coped with that because I could fully prepare and script in advance. It was interesting watching my non autistic colleagues, usually so socially adept and confident, turn into anxious wrecks at the prospect of public speaking! It was during the breaks and any follow up questions that I was completely lost.

Likewise with running meetings if I was in charge and set the agenda I was more confident than if I had to attend a meeting run by others, so much more uncertain and impossible to script in advance.

Iain said:

for those who fear social interaction because of "what if" issues then these are the ones I feel have most potential to adapt using these techniques to be able to live a more normal life.

I don't think my anxiety was ever really caused by "what if" thinking but I can totally identify with some of the other reasons mentioned in that research document. 

Now any desire I have to 'socialise' can easily be met by places such as this. If I'm ever tempted to try in person socialising in future it will be entirely within the autistic community. I've found my tribe and I've done more than enough masking to last a lifetime.

As for living a 'normal' life, been there, tried that and hated it 

My goodness, this is helpful - I have difficulty with accepting my mind might need different help but things you write 

Autonomistic said:

CBT works on the assumption that fears are irrational, that the anxiety must be caused by thoughts which are faulty in some way

Yes I'm not irrational, these things happen all the time, there are jobs created to manage this. My issue is making this too much a part of how I function. Allowing fear to guide me.

Autonomistic said:

Sadly when an autistic person is given standard CBT therapy it can all too often leave them feeling worse about themselves than before. Being told that our fears are irrational is an invalidation of how we experience the world. The sense of failure, that we cannot do things that others can, increases.

Yes, and this resonates for me because I trained to be a counsellor. I wanted to help people and I was good at it. But I didn't know I was Autistic so it didnt work out. Maybe I will try again.

Autonomistic said:

For years I wrongly believed that if I repeatedly forced myself to endure social situations it would get easier and the anxiety would reduce. It didn't.

Thanks for that well reasoned reply. It does make for very useful reading.

For the social situation exposure you mention above, what were you using to control the anxiety? I use a mix of meditation and mindfulness (mindfulness is not really well suited to the cut and thrust of the actual social interaction admittedly) to prepeare myself and manage the "coming down" afterwards.

I found the fears of social interaction were conquered in the end by learning more about what to expect (using the books I normally recommend), masking and basically exposing myself to the situation to prove I could handle it.

This builds confidence which reinforced by mindfulness allows me to engage in social situations that would have paralised me previously (eg public speaking, running project meetings with dozens of people present or dealing with conflict resolution situations.

There are a handful of character types who I will never be comfortable with (narcassists and psychopaths mostly) so I actively minimise contact with them, sometimes by being blunt and a telling them I'm sorry but I have to go, then moving on to somewhere / something else.

I entirely accept what you say about exposure to sensort input being near impossible to overcome, but for those who fear social interaction because of "what if" issues then these are the ones I feel have most potential to adapt using these techniques to be able to live a more normal life.