For some, finding the right therapy can be difficult. It’s not just as simple as going to your GP, requesting a Mental Health referral and waiting for CBT. It can take a lot of trial and error before we find what works best for us. But what happens when you’re constantly being put through the incorrect treatment due to a misdiagnosis?
The first guest post this month is from Ruth over at That Autistic Fit Chick. She discusses her journey through various therapy types and finally getting an accurate diagnosis at the age of 28.
“Therapy and me.”
In the ’90s and the early 2000s, nobody was looking for Autism in girls. I wasn’t diagnosed until 2018 at the age of 28. However, I was noticeably struggling by the time I was 7. My mental health continued to decline, and my therapy journey began with school counseling when I was around 11.
Since then I’ve done a lot of therapy, so I’m going to give you a quick overview of some of the therapies I’ve tried and why I did (or didn’t) find them helpful.
Counseling;
I’ve had counseling on six different occasions in my life. Some counselors I found useful, others not so much.
I was brought up in a home where expressing any struggles, or any emotion other than “happy” was seen to be disobedient and punished. I’d never felt safe to talk to anyone about the things that bothered me until I started seeing my school counselor.
Being with an adult who allowed me to express dissatisfaction and unhappiness, and who encouraged me to talk openly about my social struggles and home life, was the first time I’d ever felt listened to. The power of being heard and not being punished for expressing myself was groundbreaking.
All the counselors that I found helpful focused on really listening to me and encouraging me to express what was happening in both my world and my head. They even listened when I couldn’t put names to all the emotions.
Counselors that I didn’t find helpful were the ones who would ask me lots of questions that I didn’t have answers for. They’d get frustrated when I couldn’t give them the answer they wanted and I’d become distressed. I’d feel like they were thinking I was holding something back, when I wasn’t consciously doing so, and every session I’d leave feeling like a failure.
Overall I think counseling was one of the most helpful therapies I experienced. It was certainly one of the ones I ‘clicked with‘.
“The healing power of having someone to just listen is hugely underestimated.”
While I didn’t really process any of my trauma or learn any specific skills, the times I was in counseling weren’t really the right times for me to be doing that.
CBT
I did a single cycle of CBT in early 2005 during a psychiatric admission. We were taught that there was a triangle of thoughts, feelings, and behaviors that were fueling our mental illnesses. This triangle worked in the same way as the fire triangle in that if one side of the triangle was taken away then it would collapse and we would be “cured” of our mental illness.
The focus was purely on eliminating behaviors, in particular, self-injury.
“It sounded so simple. If we stopped hurting ourselves, we’d stop wanting to hurt ourselves more. The thoughts and feelings surrounding us when we self-harmed would just disappear, they would become extinct along with the behavior.”
14 year old me still trusted adults implicitly and was so excited that this was going to make me better. It was a shocker to find that stopping what had become my only coping mechanism actually led to a sharp decline in my mental health.
Whenever I brought this up in therapy I was told that it must be my fault and that I must be doing it wrong. They tried to convince me that I wasn’t “fully engaged with the process” and to stop talking about it because it was discouraging the other patients and inhibiting their progress.
Having discussed CBT with other people as an adult, it sounds as though the therapy has either moved on and improved a lot since then, or that our group was run by some pretty rubbish therapists.
DBT
With the failure of CBT I was moved to a new ward in the hospital that was dubbed “self-harm rehab”. On this ward, we did intensive DBT. I spent a year there and completed the entire program 4 times.
Every time we did the program I found more inconsistencies within it and would challenge the therapists.
We were told that DBT was like CBT with some extras. It was split into 4 modules; Mindfulness, Interpersonal Effectiveness, Emotion Regulation, and Distress Tolerance.
If we were to master the skills from each of these modules then we would be able to communicate our distress, manage conflict, and cope with our overwhelming emotions without resorting to self-injury. Sounds fantastic!
Mindfulness;
The reality was that the only type of “mindfulness” we were taught was meditation. These sessions were usually guided meditation, and on a bi-daily basis, we were made to sit and meditate. That, or lose any privileges we had.
I later learned that we were being taught “Transcendental Meditation”. We were taught to be emptying our minds of thoughts so we could reach a higher plane.
I personally found every session distressing because I’d be told that I’d failed constantly. At that point, nobody had picked up on my sensory sensitivities and the fact that I literally could not block out the sounds around me. I was just told to try harder.
Interpersonal effectiveness;
The interpersonal effectiveness module was a waste of time. I’d already learned how to hold a scripted conversation, I’d learned the skill of appearing interested in what other people say, and how to hold eye contact even though it was painful for me to do so.
The most dangerous part of this module for me was the introduction of never being allowed to say “you made me feel” because nobody else could make you feel anything. Apparently, you were solely responsible for your own emotions. With my literalism, this left me so vulnerable to toxic and abusive relationships as I reached adulthood because if nobody can make me feel anything then it’s my fault.
They were inconsistent with their approach to the way I communicated. On one cycle I was told to swear for emphasis because I have a flat tone of voice and fairly blank expressions. Then the next cycle I was told that I shouldn’t swear at all because people didn’t listen when you swore. No matter what I did or how closely I followed their instructions I was told that I was doing it wrong.
Emotional regulation and distress tolerance;
Emotion Regulation and Distress Tolerance modules were no better for me. While they included new skills and acronyms such as PLEASE MASTER, the skills didn’t help me to regulate myself at all.
The final nail in the coffin for DBT was when the lead therapist told the group that if self-harm worked then we would only ever have to do it once and we’d be happy. When I challenged that logic with the response that DBT skills must therefore only need to be practiced once and we’d all be better, let’s just say that wasn’t appreciated!
Transactional Analysis;
I came into this one at the end of a cycle but for some reason, it was stopped. This meant that I only got one or two sessions, which is a real shame because I’ve always felt that it had the potential to be really helpful for me. Whenever I’ve requested it as an outpatient I’ve been met with blank looks. I’m not sure if it’s an outdated therapy that has been mostly replaced with CBT and DBT or if it was an outlier even when I tried it and it never became mainstream.
We were taught that we had different internal voices.
- Parent voices which can be both nurturing and abusive.
- Adult voices which can be rational and reassuring.
- Child voices which are usually emotion-driven. In my case, this is mostly afraid and confused.
When we had intrusive and distressing thoughts it was helpful to try to identify which voice the thought belonged to. We then had to respond to it with another voice. For example, if the voice is that of an abusive parent talking to a child, then we respond with the rational Adult. That way we would be protecting the child while challenging the parent.
The one issue with this therapy for me is that I tend towards dissociative states and I hear voices anyway. That being said, it was the best way for me to look at my own self-talk.
Art Therapy;
I’ve had mixed experiences with Art Therapy. As an inpatient, we would take part in art therapy every Monday afternoon. They were the oasis of my week as it was completely focused on creation. Although it was run as a group and we could discuss our projects, if we didn’t want to then that was okay too.
As an outpatient and an adult, art therapy has always been about being able to explain what the picture is communicating and how you feel about it. The mediums have been prescribed, rather than dictated by the user. Trying to find images in a Country Life magazine to make a collage about your week when you’re 19 is challenging.
Overall art therapy has been great when I’ve had the opportunity to just express myself without having to find the correct words to go with it.
Mentalisation Based Therapy;
MBT was my last group therapy, and to be honest, it was a bit of a Hail Mary.
I went into the group angry. 7 years previously I’d been told that the only therapies that worked for my diagnosis were CBT and DBT which I’d already done. So, to find out that MBT was actually the gold standard, and not only had it not been offered to me, but it hadn’t even been mentioned as a treatment that existed. Yet it was available in my area the whole time.
I was also excited because I so desperately wanted a therapy that would teach me how to function better in the world. Having accepted that Borderline Personality Disorder was for life, not just for Christmas, I just wanted to regain enough control and understanding to function.
From the offset, this therapy was wrong for me. I had no difficulty in imagining what other people might be thinking and feeling. It was a skill that I had spent a lifetime perfecting. But I couldn’t read facial expressions. I was worse interpreting the photos than anyone else in the group.
“What do you think this woman might be feeling?”
“That her eyebrow itches?”
When it came to written scenarios though, my main issue was a lack of relevant information so that I was unable to narrow down the possibilities. If Sandra has been texting Jack and he’s late home from work, I need to know if there’s been a history of car accidents in Sandra’s life or if Jack has cheated on her before. Without more insight into their lives it’s difficult to say why Sandra might be feeling concerned, or if she might also be feeling angry.
The other patients in the group picked up that I was very different from them in the way that I view the world and the people in it. They were also able to pick up on the fact that the lead therapist treated me very differently from anyone else.
I used to go home crying and I’d always assumed that it was because therapy was supposed to be difficult. When the other patients pointed out that he was picking on me in a way he didn’t on them, I initially assumed they must be misreading the interaction. That was until one of them challenged his behavior towards me in a session and I watched him turn on her.
The subsequent complaint is what led me to the reassessment of my mental health diagnoses, and the admission that I had been misdiagnosed with BPD at 16. It was also when I flagged up as autistic in an autism screen and was sent for diagnosis.
This was the first time in my life that I was told by a psychologist that it wasn’t my fault that the therapies I’d done had been ineffective.
They simply weren’t designed for my neurotype.
Currently, I’m still waiting for the therapies I was promised would be offered after my Autism assessment. I’ve been told that there’s CBT which has been Autism adjusted. If I were to go ahead with it, I’d try to go in with an open mind despite my previous experience.
After learning about more therapy options from Nyxie’s Nook, I’d like to try others like ACT, EMDR, and EFT.
“If a therapist tells you that it’s your fault that their therapy isn’t working; They’re wrong. If one therapy doesn’t work for you, it’s not your fault, it’s probably not even the therapist’s fault, it’s just not a therapy suited to your brain type and way of thinking. Don’t allow therapists to blame you for not responding in the way they expect.”
Ruth is the author of the blog That Autistic Fit Chick. It’s packed full of healthy recipes, mental health and autism awareness, wellness, and information about various workouts.
Ruth is a Yoga enthusiast and works along side a personal training to keep her at her fittest! She’s an inspiration, and has been a big supporter of Nyxie’s Nook since day one.
