Published on 12, July, 2020
Hi, I was diagnosed several months ago now, at the age of 32. I felt so understood when I was having my diagnostic assessment, however since receiving diagnosis, I have struggled to find support afterwards. Everything is aimed at children and not adults. I contacted somewhere that sounded promising however they wouldn't give me an appointment as I was outside of the area. I was so disappointed, it sounded like just what I needed, it was advertised as they "help you identify the gaps and barriers you are experiencing to receive the support you need". The area I live in doesn't offer this service. Now I am a bit lost. I filled out a PIP application as advised by the lady who assessed me however I don't want to do nothing, I already have depression and I think not having a job is making this worse. I am unemployed after leaving university as I was doing a course where I had to continuously mask, leaving me exhausted. Since leaving, I have struggled with no sense of purpose. Am I missing something, is there any services for newly diagnosed adults? I was hoping "finding myself" would be empowering however I haven't been offered any interviews since I started disclosing autism on my application forms to employers. I am also a mum of two. I want to be a good mum to my children but feel useless at this due to my fear/anxiety of social situations/crowds so I don't take them out much and try to give them everything they could want at home to compensate. My parents take them out to places when things are on however I feel guilty that I can't just be normal. Does anyone have any advice please? Thank you
Sorry to say there's little support out there for autistic adults. Try your GP see if they have someone you can talk to. You might get lucky and find someone with experience of autism. I found a doctor just like that, I was really lucky.
I'm also lucky to have a very understanding mental health nurse who offers me a lot of support.
As I said, I spoke with the GP and I was treated with six sessions with a completely untrained CBT operator. They did more harm than good, he had no clue about ASD
Sadly most GPs have no understanding of autism. Have you tried a CBT specialist outside of the NHS? I've heard they can be helpful for some people.
NHS choose to adopt CBT just because it was the cheapest of all therapeutic options.
I agree that CBT is not helpful, not in my experience anyway. Before I knew I was autistic I had a couple of courses of CBT for anxiety and actually ended up worse afterwards.
The NHS standard therapy is quite patronising and automatically assumes that all thoughts and fears must be faulty and irrational and need to be fixed. They seemed to think that I must be fearful of making a fool of myself or being judged but I didn't think like that at all.
Also there can be a tendency for therapists to blame the client if their therapy isn't having the desired impact. I was led to believe that it was my fault in some way, that I wasn't trying or pushing myself hard enough. That I was being deliberately un-cooperative when I couldn't identify or adequately communicate my thoughts or emotions.
I now understand that it was perfectly rational for me to feel anxious and avoid places and situations where I would experience sensory overload and trigger meltdowns. The key is understanding what is rational anxiety and what isn't. It is the sensory environment that needs adapting rather than the thoughts.
There is an interesting article here (co-authored by the well respected Tony Attwood)
https://attwoodandgarnettevents.com/can-cbt-be-helpful-for-autistic-adults-part-1/
https://attwoodandgarnettevents.com/can-cbt-be-helpful-for-autistic-adults-part-2/
A couple of relevant sections from the links above:
"Our clinical experience indicates that for many autistic clients, repeated exposure to the painful sensory experience does not lead to habituation. Any graduated exposure programme needs to accommodate the autistic person’s sensory profile, otherwise, there is a significant risk of increasing the person’s anxiety"
"We are increasingly recognising the potential for autistic burnout when demands exceed coping abilities or burnout as a response to stressful life events and long-term camouflaging (Higgins et al 2021; Mantzalas et al 2021). Recovery is protracted and may last months or years. Burnout affects mental health, energy levels and cognitive abilities. According to Higgins et al (2021), the degree of cognitive confusion and overload associated with autistic burnout could limit the effectiveness of conventional CBT. For example, many clinicians may treat depression using the traditional CBT methods of behavioural activation and increasing social contact. Both these methods are likely to increase burnout leading to a worsening of symptoms."
Yes, my experience of cbt has been similar. I've given up on therapy for the time being, because in every instance I knew it was pointless before the end of the first session. The practioner didn't get it, I was way ahead of them and they seemed unable to grasp what I was telling them. Maybe this was a double empathy thing in some cases, I don't know.
In any case, none of it was remotely useful.
I didn't know that I was autistic then and neither did they. It may well be better with a practioner who started from an understanding of neurodiverse people.
Yes autistic people usually do have a very well developed negative intuition, I would say that we have too much baggage and safety behaviours for most practitioners to be skilful enough to break through with declaration alone, especially considering that they have 8 weeks to do there job and there organisation usually wants them to go for big results..
When I talk to the practitioners you can usually only riff with them for so many session before they start stick to the programmed responses..