I'm giving Cognitive Behaviour Therapy (CBT) another go - albeit again I'm becoming disheartened by the process. These so-called professionals really aren't geared to deal with an autistic perspective at all.
The Practitioner specialises in 'anxiety issues', and readily admits he has no idea about autism - saying I'm the 'expert' (god help me). He seems intently focussed on the issue of 'panic attacks', even though I say to him I don't consider myself as ever had one. Yet he focuses on anxiety issues with the attention worthy of an autistic! Okay, I do suffer anxiety with the best of Autistics, but for me (cognitive/sensory) overload is far more of a problem. If anything, as a defense mechanism (or attempt to redistribute internal resources) I tend to go into a catatonic state when suffering from overload (unless persistently exposed, whereby I can reach 'meltdown' and lash out), rather than the hyper-aroused state I would assume is a panic attack.
Part of the problem is that I'm having trouble explaining to him the difference between 'panic attacks' and '(cognitive/sensory) overload'. Indeed, I'm seemingly just not getting across to him just how complex and deafening the autistic mind can be, and how exhaustion results from trying to process the sheer volume of thought, rather than a build up to a panic attack.
Does anyone have a clear-cut and concise way for me to explain the difference between a 'panic attack' and '(cognitive/sensory) overload'?
I think we could talk and talk until we’re blue in the face and some people will never hear us.
My psychiatrist is excellent. He’s really good at spotting autism in order to diagnose but I can tell (which is a wonder for me!) but I can just tell that sometimes, he hasn’t got a clue what it’s sctually like. Which made me realise, how could he? I’m just grateful he’s so good at spotting it. He does help me though regardless of his inability to really stand in our shoes.
For example. I have pathological demand avoidance and he made me realise that I’m not really avoiding things. It’s actually, self preservation. Since he made me realise that, there has been a huge shift in how I treat myself at times when I used to think I was avoiding stuff. Now I know I’m actually looking after myself.
I have a support worker now who told me she knows little about autism, but she’s researched it and because she’s open to learning more and she sees me as a person, not just an autistic person, she has been able to help me.
However, my work coach at the job centre has worked with adults with severe autism and she has a step daughter who’s autistic so the help that she gives me is something else.
I realised, after having a meltdown in front of her, that I have never before been around somebody who actually understands a meltdown and knows how to deal with it. She was amazing and she taught me how to deal with the aftermath.
So although I get help from all 3, there’s a definite difference in the help I get from my work coach who has actual hands on experience of working with people with autism.
The mental health team just kept trying to tell me it was anxiety and depression when I knew it was none of those but I could never get them to see that. Mental health nurses are very prescriptive in their approach. It’s the way they’re trained and I could not get them to see it wasn’t anxiety and yes, they gave that subject the level of attention worthy of any autistic person!
There’s a gap in the market for workers with experience of autism and certainly the mental health teams are not trained in autism. I think we all have a lot to learn.
The only thing I could sugggest would be to contact somebody who works specifically with autism and if funding is an issue, you could get it paid via social services in the form of a direct payment or through a health budget which you don’t contribute to.
There’s an organisation in the uk who charge only a nominal fee and I’m sure there are others but that’s the one I found when I was looking for support specifically for adults with autism.
I see it as part of my job now to inform and educate others about autism. I tell everyone I meet, shop keepers the lot, I can’t not tell everyone I come into contact with but in terms of support, when we need support, we don’t want to be the experts, that doesn’t make sense. Yes of course we know ourselves better than anybody else but we wouldn’t be at the therapists room if we didn’t need some support and guidance.
I think it comes down to the level of freedom you have in the relationship as to how much help the other person can be, regardless if they understand autism or not but the mental health teams don’t offer that level of freedom that’s needed to allow the support to be the right support.
My support worker is from the local authority social services wellbeing team and I’m so grateful to her. I wouldn’t be where I am today without her support and the support from my work coach at the job centre.
When I get back to work, I’ll be specialising in working with people with autism, there’s a real need for it.
Well, it seems to me that Evan isn't getting the level of help he deserves, which is pretty commonplace nowadays, what with the terrible underfunding of the mental health sector in the NHS. Going private would be extremely expensive, of course, and perhaps there would be travelling issues involved too. Having said all that, at least Evan is receiving some form of therapy, which I suppose is better than nothing and I think he needs to persevere in trying to 'get through' to his dodgy therapist because it might be a case of developing a deeper understanding and communication relationship with him (her?). Maybe it's best to look upon the whole thing as a learning experience for both parties involved and, hopefully, things will improve. I think this approach is more positive than focussing too much on the shortcomings of the situation.
The point here, I think, is that CBT is an ongoing process that aims to change one's habitual pattern of negative thoughts that has proved to be unhelpful in the past and, gradually, replace them with more constructive patterns of thinking. This takes time and effort but through determination can be achieved. We have to work with what we have and never give up trying.
What level of support does Evan deserve? Is the support he deserves different from the support he needs? Sorry, that’s a bit confusing to me.
What makes you say ‘going private’ is extremely expensive? Are you talking about private therapists who work with people specifically with autism to support them in their day to day life? I guess as well you would need to specify what ‘extremely expensive’ means as that will be different for everybody as well.
Some form of therapy, however much it may be lacking, may be better than none for some people and you sound very confident that that is the case for Evan. I can only assume you two have been discussing this elsewhere to have known that, which would explain how you know that his therapist is also dodgy. I’m not sure what you mean by that, it’s not clear from what you said but it makes sense if you two have been discussing this in more depth. But out of curiosity, what is a ‘dodgy therapist’? It doesn’t sound very safe to me but I’m not sure what it means so it may not be as scary as what it sounds to me.
I think most traditional therapies are an ongoing process which for me, didn’t result in much understanding or in any solutions, other than short term improvements. CBT sounds like an awful lot of effort though, becoming aware of our negative thought patterns and swapping them out for more constructive patterns of thinking. I’m curious to know how CBT helps a person to the swap the thoughts? Are you saying it teaches what thoughts to think and how to think them? Determination sounds like hard work as well, I can’t quite describe how that words feels to me but it’s kind of like a tight fist, so tight that the fist won’t let go. Does CBT teach you how to get the determination first and then it helps you swap the thoughts?
Obviously, Evan deserves the best possible support available but, as we know, resources are limited due to NHS underfunding and although I have no personal experience of private therapy for Evan's issues, any private provider will not be cheap since it is a specialised service and if carried on for an extended period will cost a considerable amount of money. By 'dodgy' I simply meant Evan's therapist did not seem to be relating to him as he would have liked and I can only judge things from what Evan has reported. CBT is not guaranteed to work but that does not mean it is inherently inadequate; it requires the right kind of approach by both therapist and patient and like any tool will only be as effective as the participant's efforts put into it. An individual may not be ready to gain the most from such an approach, in which case deferment of CBT might be better and alternative solutions explored. If a person really wants to participate in whatever treatment is selected so much the better but ultimately it is up to an individual to take a degree of responsibility for their own progress - there is no magic formula I'm afraid.
But you are right when you say some form of therapy is better than nothing because even if there seems to be little progress at the time, by sticking to it and becoming used to the concepts involved in CBT one will inevitably modify one's thought patterns to some degree, although, naturally, this can take time. Also, by not giving an approach a reasonable trial, it can lead to skepticism about other approaches, leading to a general cynicism regarding any treatment, which would be highly unhelpful. As to hard work - well, isn't anything worthwhile thing in life worth some effort? Nothing is going to fall into our laps by us being passive. We really do have to make things happen with the help of the right kind of support. There are no free lunches, I'm afraid.