Autism & anxiety

[ThatLassFromLeeds]

I hope it’s ok to post here - I don’t have a diagnosis of Autism, but strongly suspect that I’m somewhere on the spectrum. I’ve never plucked up the courage to go to the GP and ask to be tested.

For as long as I can remember I’ve had fairly severe anxiety. As a child I hated going to anyone else’s house, would get really stressed at the idea of it (even birthday parties etc). I’d get really worried about travelling anywhere in case I got travel sick. Wouldn’t do school residentials, that sort of thing.

As long as I stick to my own routine these days I’m not too bad, but I dread the thought of going out for a meal or being invited to someone’s house for dinner. I have a job and 2 primary-school-aged kids, and that’s all manageable, but even in work I dread the thought of my manager suggesting we go for a meal (which happens from time to time if we’ve someone visiting the office or whatever).

To be honest there’s a lot of stuff that is no longer even on my radar as being possible (eg I have a couple of friends living abroad; I’d love to visit them but it’s just not even an option).

About 20 years ago I had a couple of courses of CBT, but it didn’t really help - it always just felt like the therapist was almost talking a different language. For instance, she’d talk about trying going out for a meal and she seemed to think that if I did it once then I’d be fine from then on; I feel like if I do it once I’ve done it once, and there’s no knowing what will happen next time.

Anyway, thinking about it and doing a bit of research, I think maybe anxiety that comes from neurodivergence is somehow “different” from anxiety in neurotypical people. I wondered whether anyone else has found that their experience of anxiety seems to be “different” to what’s expected by things like CBT? Has anyone found anything that works for “Autistic Anxiety”?

I feel as though anxiety has dictated my life for so long, and I really want to break free of it, but I don’t know how.

I have long term anxiety OP. I 've always termed it Social Anxiety. It's got much worse these past few years - isolation in Covid where I spent a lot of time by myself sent me into a pretty dark place which I've not recovered from. And my life is severely limited by my Social Anxiety. I identify with a lot of the behaviours and worries you talk about.

A couple of years ago I asked for a referral fir CBT because I was desperate to try and do something about my life - I'd had experience of CBT a long time ago and it had helped me at that point. When I eventually saw a therapist I found it really upsetting. She was nice enough but a trainee with little experience and the threrapy was mainly exercises from work sheets. I knew if I braced myself to do the things she asked me to do - eg go in a cafe - i knew I coud do it once. But I would never be able to do it a second time. It wouldn't make it any easier. In short, I eventually wrote to the therapist and explained how I really felt and she said as she didn't have the expertise to help me she would refer me to a Clinical Psychologist.

The Clinical Psychologist was brilliant. And we spent sessions talking about my past, right from childhood. And I told her i'd long suspected I was Autistic. So she put through the tests for Autism. And gave me an unofficial diagnosis that I am indeed Autistic. She put me in touch with organisers of an online course for people diagnosed Autistic late in life. It was an introduction to what Autism is. It was very helpful. But the Psychologist herself told me she didn't have the knowledge to help me further .

And the diagnosis confirmed for me that there wasn't anything, no therapy , that could change me. And the Social Anxiety was me. And there was nothing I could really do to change my self.

So yes I agree with you that the anxiety experienced by Autistic people is a different type of anxiety. Whereas I am pleased to know I am Autistic because it has released me from a lot of guilt I felt about what I perceived as my inadequacy I have found the knowledge I can't change very depressing. I have also attended a course which confirmed to me that I am probably AuDhd.

Gosh I am sorry to be so negative OP. Because I really really identify with your desire to break free from the limiting life anxiety dictates. You will be much much younger than me. Your chances of finding some way to help yourself are much greater.

@AnonymityAnonymitythank you so much for that. I’m sorry to hear that you’re still suffering from anxiety, but it’s good to hear a similar experience. I had CBT a couple of times; the first therapist was lovely, and I think just talking was helpful, but the worksheets etc just didn’t help me. The second therapist was a bit abrupt and almost seemed offended that the therapy didn’t work. I came away feeling like I’d failed.

I’ve been doing some online research, and it does seem like “autistic anxiety” is gradually being accepted as a “thing”, but it doesn’t sound like much research has happened yet.

I know my anxiety is very much tied to how I’m feeling about myself; when I’m feeling generally good, I’m much calmer than when I feel bad about myself.

Here’s hoping “they” are able to do more research and find something that helps.

Thank you again for sharing.

I spent most of my teen years and early adult years on medication and in and out of CBT for anxiety that later turned out to be autism.

Meds and therapy did not work at all.

My occupational therapist who has done my autism and dyspraxia assessments has been very thorough with me and explained to me that autistic anxiety is usually referred to as distinct or direct anxiety.

Anxiety in general (bar GAD, panic disorder, etc) is usually centred around What If scenarios.

It might not feel that way but when it's explored in CBT type therapy it is usually scraped right back to a series of overthinking what ifs. It keeps people up at night, it is all consuming, it is disabling, but it is usually based on internalising worst case scenarios that have not demonstrably happened. CBT works well for this type of anxiety.

With distinct autistic anxiety the anxiety is around our needs not being met in one way, shape or form.

It's what if my routine is interrupted. Very plausible that this could happen, because it happens. What if it's too noisy. Again very plausible. What if I say something and I am misunderstood because people always infer meaning that isn't there. Textbook. What if I get overwhelmed and there is no safe way out.

The difference is that distinct anxiety stems from a history of these things happening over and over and them continuing to happen, leading to chronic stress and dysregulation.

Advocacy is the best tool for autistic anxiety. Knowing your sensory needs, knowing which categories of the diagnostic criteria you are most affected by. Knowing what accomodations you need at work and in your personal life can be requested and made.

@Jimmyneutronsforeheadthank you, that’s incredibly helpful. What you say about needs not being met is very true, and I think that’s at the root of why I didn’t get on with CBT. The therapists kept saying that if I’d done something once I could do it again, but my brain would say “What if it smells different this time?” or “What if it’s more crowded?” etc.