Adapted CBT therapy that worked

Thank you for sharing this. I have a long list of things I want to be better equipped to deal with. I am not sure which stems from autism, which from trauma and which from both. The two can't be separated and dealt with on their own. So yeah, someone who understands both would fit me best. It sometimes takes me days, or sometimes years to figure out something wrong/awful has happened. So I am fearful of mistreatment, misunderstanding, mis... this, mis... that. It's like I can't process even the most obvious things. Trust takes years to build with me and slowly comes progress, which I'm not sure is a great situation, considering how much these sessions would cost. 

 I will need to have a proper think about what help I need. What is an advantage, though unusual by NT standards and what is a disadvantage. Some of my issues stem from autism and some from trauma. Thank you for sharing. 

I am also not English, some of the things I say may not make sense to an English person, because of the cultural differences. So I understand your comment about that. I am waiting to see what the report says, because I am not sure what I need help with and can't seem to find the time and energy to sit down and think about it properly. You can leave a comment with your book recommendations. Thank you 

Thank you all for your replies. Will have a read through all of them and comment if I need more info. 

God. I empathise entirely. 

It's less a case of strategy, but more expressing the concerns out loud in a coherent way to someone who is getting it that kind of helps. It's just sort of grounding and having told him and been reassured I am actually expressing it such that it makes sense, I guess it equips me better to express those concerns to a doctor in a way they can understand. Knowing I can do that helps reduce the nerves.

Also, one of my major problems, beyond the sensory bombardment I need doctors to understand, is communicating the physical problem itself, particularly as I'm a synesthete and some body words even trigger. Throughout my life I've had doctors snapping at me because I can't get the words out to describe pain and physical sensation and the relationship tends to go down hill from there. I guess my counsellor is giving me an opportunity to 'script' the conversation ahead of time, finding the words that will correctly convey the issue and desensatising me a tad to the difficult vocab.

As far as that goes, I guess a friend who gets it could also rehearse those things with you. 

The key for you might depend on why it's so difficult for you to deal with. Is it the sensory experience of being there, the sensory experience in being examined, the worry about health, or the difficulty in communicating the problem, or the social business of getting past the receptionist, do you shut/melt down etc?

Making this easier on you might depend a lot more on the doctors understanding the specifics of what is difficult and why, and then taking their time with you and trying to mitigate the problems as much as possible. It might help to write to your GP listing the aspects of health and treatment that are hard, asking what reasonable adjustments can be made and if that could be communicated in referral letters etc to hospitals ahead of appointments there, so the staff know it's tough for you and accomodate before you go. You might find an advocate (which you won't have to pay for) from somewhere like voiceability might help. They could go with you and communicate the hard parts for you. All those things in turn help reduce the anxiety when you are there.

If on the other hand  the issue is less sensory / communication/ information processing, but health anxiety, you could ask your GP for autism informed CBT, or if past medical trauma, for autism informed psychological therapy.

I had CBT which was helpful but I think only gets me so far. As someone said above, it depends on the root of your anxiety.  For me, I think some was/is GAD but some is AS.

I've heard of DBT for autism but don't know much about it, maybe look into it.

Hi Dawn - can I ask how your therapist helps you with your anxiety before medical appointments? I have a real problem with this but I cannot afford to pay for a private therapist. What advice does he give you? At this point I can’t bear to go anywhere NEAR a doctor’s surgery or hospital. I recently had to cancel an appointment for a scan at a hospital because of this. Can you share any strategies that have helped you? Thanks 

I guess it might depend on whether you think anything you experience is actually rooted in what you think or whether it's rooted in any of your autism's core features.

Before I worked out I was autistic and was properly diagnosed I had years of CBT and other talking therapies to deal with my medical phobias. They didn't work, I was blamed and thrown in the MH bin for not changing what I think and getting better and my meltdowns in medical context and under health related stresses misunderstood and I was labbled EUPD (utter BS).

Throughout it all I was being told I was having panic attacks and needed to 'control my emotions', whilst I was repeatedly describing what I now know are shutdowns and melt downs and an inability to communicate physical experience to medical staff. I kept saying over and over that whilst I followed CBT logic it did NOT match anything I was experiencing. I was being gaslighted. My reality denied and it did me more harm than good.

Now that I'm having to shell out thousands to get the NHS to clear up my diagnostic position for my own safety; a shutdown or a melt down is not a histrionic tantrum and it won't help me deal with the medical anxiety if medical staff view it that way, the private clinical psychologist I saw with expertise in both pds and autism voiced exactly the conclusion I came to the day I realised I was on the Spectrum: my experience IS real and no psychological therapy would work because the problem is in my neurology and what I 'think' is irrelevant.

So, if your problem is to do with something like that: your sensory system or some other core feature of your autism, you need something other than talking therapy or meds. Luke Beardon points out that autism + environment = outcome. You need some way to adapt the environment or the way things are done to cope. I'd recommend his little book on avoiding anxiety in autistic adults btw.

BUT that is not to say that adverse experience can't leave autistic people with psychological traumas and scares that talking therapies can help with. And there, yes indeed, you'd need a therapist with a solid understanding of autism who is capable of adapting to your need.

https://www.bacp.co.uk/about-therapy/how-to-find-a-therapist/?gclid=Cj0KCQjwyYKUBhDJARIsAMj9lkFNCNW6jq3ANTRnZZFbTK_SDjMV_Z4FIHdqXoTzHb8yuUORvS4RY5EaAkANEALw_wcB

This is the website of registered therapists in the uk. If you think anything about your problems might lie in your thinking, I'd recommend trawling that for someone with a back ground in autism.

Of course, for many, and you will know if you dissect the issues you face, the answer can be a bit of both: reasonable adjustments + autism informed therapy. I have a good person centred counsellor now, who got some extra training in autism when I realised I was autistic and who was treating 'as if' even ahead of my official diagnosis. He helps shave a tad off the medical anxiety ahead of my appointments, but the real solution will lie in the understanding and adaptations I now get from health care professionals. The more positive experience I have, after a life time of negative ones, the more I'll learn to relax and built trust with them.

Can you recommend a really good CBT book for autistic people?

I've not personally had adapted CBT because when I had CBT I didn't know that I was autistic.  And neither did the therapist.   But these days I would be asking questions about how it's adapted because, of course, we're all different and really it needs to be individually tailored.   What adaptations would you need or like?

Aucademy have a couple of videos that might be help when choosing therapy or the type of adaptations you need.  Here's one of them:-

https://www.youtube.com/watch?v=rq7UPvQxJgM&t=3s

It might also be worth asking why they made this recommendation.  CBT is quite a directive approach and many autistic people aren't comfortable with this.  A person-centred approach might appeal more, but often isn't recommended by the NHS because CBT seems to have more measureable outcomes.  I say "seems to have" because much of the data comes from quite basic self assessment reports which are very subjective and many people drop out before they even get to that stage. 

Here's some more on the person centred approach:-

https://www.youtube.com/watch?v=ShhpNjbsGW4&t=1s

That's not, of course, to say that CBT wouldn't suit you.  It can be very logical and assist with identifying thinking habits that might not be working very well for you.  Valerie Gaus has written a couple a books about it.  That said, I'd be put off by the language used and, looking back at my own experiences, no amount of adaptation would have made it a better fit for me psychologically.  After years and years of not realising that I'm autistic, it smacked of getting me to adapt rather than encouraging me to ask for the adaptations and help I needed.  I might just have been unlucky though.    

Even adapted, it didn't work for me. My problem wasn't the way i was thinking but social and environmental factors causing me the issues. 

It worked for me. I had a therapist that was from a different country (who completely understood my feelings of not fitting in) and they had good advice of repeating words to myself internally or verbally. I've calmed down a lot over the past year. I'm diffidently less stressed. Do you like to read? I have some CBT books, if youre interested

It worked for me. I had a therapist that was from a different country (who completely understood my feelings of not fitting in) and  they had good advice of repeating words to myself internally or verbally. I've calmed down a lot over the past year. I'm diffidently less stressed. Do you like to read? I have some CBT books, if youre interested

I have found it helpful 

Hi @anna,

Thank you for posting to the community. You may want to use our Autism Services Directory to search for specific therapy in your area that may cater for people with an autism spectrum disorder. You can find the Directory here: https://www.autism.org.uk/directory 

All the best,

ChloeMod