Unseen, unheard – an undiagnosed autistic in the mental health system

I started writing this post last week for mental health week of the #takethemaskoff campaign but it’s taken me a while to publish because I found a folder of psychiatric hospital notes and letters I’d had copied after one of my stays in psychiatric hospital long before I was diagnosed with autism.  I should have burnt them, Instead I’ve kept them, carrying them and the memories they bring with me every time I moved.  I also found some of my own writing from the time. This post is a result of a lot of introspection.  It’s therefore over-long, perhaps self indulgent and contains a content warning for self-harm and suicide, invalidation and general distress.

It started twenty years ago on Hallowe’en but it wasn’t a restless spirit that possessed me.  It was something as small and inconsequential as I failing to wash up a plate properly, and suddenly I couldn’t carry on one second more. I couldn’t pretend or stop putting on a happy face.  I called it a breakdown, but now I know it was probably an autistic burnout.

Keiran Rose describes autistic burnout as “The shutting down of mind and body”. He compares it to booting a computer in Safe Mode, only limited functions are available. And that’s what happened. 404 page not found.  I suddenly couldn’t get up, put a face on, go to work, smile and laugh.  The resources I’d relied on weren’t there any more.  I’d try and end up crouched in the toilets crying.  It felt that everything hurt.  The world became louder, I flinched from the traffic rushing past me.

It wasn’t just about a plate of course, that was the last straw that broke the camel’s back.  It had been building for a long time.  There was a meltdown during a training course that had led me to the roof of the building threatening to jump off.  And this feeling growing and growing that I just couldn’t go on hiding any more, that I was somehow working hard to fit in and failing.  I said in my last post that I didn’t notice the mask, but I found this piece of my writing in among the notes..

“I want this fucking thing to go away. I want to no longer hide…. I don’t want to be hiding forever behind a mask that says I’m OK…. All my life I’ve been able to wear a respectable mask… the mask is an iron one and difficult to take off. I’ve worn it a long time. Trying to hide the person behind. Because (I’m)  a freak… not good enough, should be hidden away. I’m vulnerable without (the mask).”

Burnout led to depression. Feeling so bad will do that to you, especially without a roadmap that explains this is because you’re autistic.  I spent days in bed and lost my job. I had been a self-harmer since I was a teenager, but this became worse.  I drank alone, although I knew alcohol is a depressant it was the only thing that made me feel better. I felt very suicidal much of the time.

Inevitably I found myself at the doctor’s asking for antidepressants, and then, when the antidepressants didn’t help, at the emergency psychiatric clinic. That led to the first of  many psychiatrist’s offices and eventually to several hospital admissions. But my autism was never noticed

“I just want people to realise I have these difficulties”

Sometimes I think I shouldn’t be angry that no-one noticed my autism.  In 1998 – 2003, a lot less was known about the way autism can present in some people; how some of us mask so much we can’t stop, even in the depths of despair in a psychiatrist’s office.  I was articulate and able to express myself fairly well. I am interested in psychology and in myself and I made it all a special interest. My eye contact is described variously as ‘good’, ‘okay’ and ‘poor’.  Poor things, how could they have seen I was autistic, all that was known about autism back then was Rainman.

But then, here’s what the psychiatrist I saw for over a year wrote about me:

“…She has long standing interpersonal and social difficulties which extend to her activities of daily living and social skills.”

“…She has always had difficulties relating to others and was an outsider.”

“….Problem list (includes) Difficulties getting close to people, Social Anxiety, Behaviours that upset others, Low mood, Anhedonia, Lethargy and unmotivation, Forgetfulness and disorganisation”

I read that and I feel furious.  WHY DID YOU NOT SEE!

I even tried to tell them. I’d researched my problems and found ADHD (I’ve written about this before) but I was shut down and denied.  Instead my difficulties  with executive function were apparently caused by

..in part by (Cat)’s high standards which leads to avoidance and in part self hatred which leads to deliberate punishment of herself by her inactivity”. 

Another doctor in a different hospital thought it was all about the drugs 

“Asking for ADHD drugs. Says diagnosed with ADHD and dyspraxia privately. Belittles her degree by saying she did a lot of cramming”.  

He quotes me as saying I just want people to realise that I have these difficulties.

Damn right.  But you didn’t, did you, pal?

Instead like so many other people, often women, with problems that don’t fit into a neat box, I was diagnosed with Borderline Personality Disorder.

Borderline Personality Disorder

The experience of being diagnosed with Borderline Personality Disorder (BPD) for anyone, autistic or not, is often not positive.  While for some it can be a relief, as it explains their problems, there is so much stigma attached to the condition and the diagnosis. Few of the current ‘Talk about your mental health campaigns’ touch the stigma around BPD particularly currently in mental health services.  There’s a tendency for many medical professionals to see many people diagnosed with BPD in negative terms: over-dramatic, difficult, aggressive, devious, manipulative, attention seeking. People are too often been denied help because of a BPD diagnosis.  I’ve seen it happen to a friend of mine, I tried to stop it but I couldn’t. It was awful and it nearly killed them.

I’ve met many people with the BPD diagnosis and they are just people having a very difficult time, dealing with difficult emotions and the after-effects of past trauma.  Many are caring, kind and warm.  Like autistic people, they’re accused of having no empathy (thanks Simon Baron-Cohen) which is not true in my experience. Many have other conditions too which too often get invalidated as all the therapists see is the BPD.

I struggled a lot with emotion too at that time and I can see I had some traits of BPD. I’m affected by the stigma too and I want to say it was a combination of depression and undiagnosed autism and ADHD, that left me so unwell.  But if BPD is a result of trauma, it’s likely some autistic people would have it as well so, honestly, I don’t know.  All I know is that when I left London, the NHS conveniently lost my notes, and although I stayed in the mental health system, without the doctors having information from previous treatment, I was never diagnosed with BPD again.

Whatever my diagnosis, without understanding I’m autistic and ADHD, therapy could only scratch the service and actually harmed me. This was especially true of Cognitive Behaviour Therapy.

Cognitive Behaviour Therapy (CBT)

I had 60 sessions of CBT over the course of just over a year as an inpatient and outpatient.

The crux of the therapy centres around challenging automatic thoughts. CBT posits that your negative automatic thoughts affect your emotions and by pinpointing these thoughts, capturing them by writing them down and identifying the cognitive distortion, the thinking error, present in the thought, you can replace the thought with a more rational one and reduce the intensity of your negative emotion

A cognitive distortion is described as  a faulty way of thinking that convince us of a reality that is simply not true. (Link)

When I felt a negative emotion, I completed a thought diary.  This involved writing the situation down, what the emotions are and what automatic thoughts I had. I needed to rate how strongly I believed each thought, and how strong the emotion was as a percentage.  Then I had to look for the evidence in favour of the thought, the evidence against, write down the cognitive distortion from a list of 15 possible distortions. and write down the rational response and rate how much I believed that.  Once the process was completed, rate the emotion again.

Why cognitive behaviour therapy didn’t work for me

If you tell someone that what they know to be the truth is really ‘a faulty way of thinking that convinces us of a reality that is simply not true’, you’re in danger of gaslighting them.

As an undiagnosed and unrecognised autistic person when I said I felt that people didn’t like me as much as others, that wasn’t a cognitive distortion, it was a fact.  When I said I had difficulties managing at home, that I didn’t know where to start, that was a fact.  When I said I didn’t set out to upset people, that was a fact.  When I said I couldn’t go to the supermarket because it was too loud and bright, that was a fact. But I was told that these were cognitive distortions.

My therapist saw I was a perfectionist, but my perfectionism was generally aimed at being the perfect non-autistic and masking perfectly, not that I could have described it in those terms. I thought if I did that, I’d be cured. That is a thinking error, but in many ways the therapy was steering towards this.

To illustrate this, here’s an example from a thought diary I found with the notes.

Situation: I went with two other friends to visit a couple we were friends with for Sunday lunch.  I felt left out and excluded from the group and the conversation.

Emotions:  Sadness and Loneliness I believed these emotions 100%

Thoughts: “I’m always left out of things”, “I’m boring”, “People are not interested in me”, “I’m a bad person”: all rated at 100%

Cognitive distortions: Over generalisation, discounting the positive, mental filter, labelling

Rational response (written at the time) (My friends) wouldn’t invite me if they weren’t interested in me. They do like me and probably didn’t ignore me deliberately. I have other friends like my partner. I can interest and amuse people. I was just feeling over-tense and like I had to impress them on Sunday. Everyone feels left out sometimes.

What’s wrong with that?

While there is some truth in the rational response, it dismissed my very real experience and emotions.  This left me feeling very low and suicidal (I wrote “I want to kill myself” 100%)

What a rational response might have been for me in this situation…

Because I am autistic, it’s not a cognitive distortion to say I am often left out and ignored in groups of people.  While I’m not always left out of things (that is an exaggeration) it is something that frequently happens.

This social situation happened while I was on leave from hospital, so it’s no wonder that I found it overwhelming emotionally. My senses also probably felt more sensitive.  Feeling overwhelmed often leads to a vicious cycle because I’m not able to mask enough and am not able to bring myself into the group therefore I get left out, which leads to more overwhelm and more exclusion and I feel worse.  It also triggers other memories of when I was left out.

In situations like the lunch, it’s very common for me to be sitting alone, while everyone chats with their back to me. It particularly hurts when it’s people who are close friends.  Even though they probably didn’t do it deliberately, it’s a subconscious thing caused by my mask slipping.

None of this makes me a bad person.

Sadness and loneliness are valid human emotions in this situation. I need to be kind to myself and look after myself to reduce their intensity. It may help to speak to another autistic person who will understand.

The effect the therapy had on me….

Objectively I could see the logic in the process, but I couldn’t apply it to myself.

There was often a grain of truth in the rational responses. I do have a tendency towards black and white thinking and over exaggeration. I have the depressive’s habit of seeing the negative in everything.  I have problems with emotional regulation, I either feel nothing or too strongly.  However, I also experienced a lot of cognitive dissonance when what I deep-down knew to be true was considered a thinking error.  It became a process of labelling my thinking correcting it to be more non-autistic. I’d get frustrated and angry with myself because I couldn’t do it right.  I interpreted it as a fault in myself.  I came to believe I was irrational and illogical, because I didn’t believe the rational responses.

The thought diaries became a tool to beat myself up with. I either wouldn’t do them or if I did start one, get half way through and scribble on it or screw it up. This left me feeling angry and full of volatile emotions that I struggled to identify. Although my therapist kept claiming I was improving I felt worse.

I became very frustrated.  I had many meltdowns, self-harmed a lot and felt suicidal. I sometimes lashed out at others. I felt on the edge all the time.  My relationship suffered.  I was in and out of hospital.

My cognitive therapy ended when I attempted suicide and was sectioned.

Falling further

After the CBT, I spent six months as an inpatient in a unit dedicated to helping self-harmers. Being there was partially useful helped me reduce my self-harm and explore difficulties in relationships and anger-management.   But it was very stressful and the notes record many meltdowns. By then I had learnt to understand my experience in terms of Borderline Personality Disorder.  In 2002, I wrote about what was obviously a meltdown: “I really flipped out on Friday. Feel ashamed of my behaviour as I wasn’t able to ask for help but just was attention-seeking and manipulative”.  All I’d done was create another mask that fit their beliefs.

After I left the unit, I had the worst burnout I’ve ever had.

They’d recommended that, when I left, I lived in supported accommodation, but I couldn’t get funding.  My community psychiatric nurse left and wasn’t replaced and suddenly I was alone.  And I had no functioning abilities at all. I spent the whole of a year in bed because everything felt impossible. I couldn’t figure out how to get up, how to get dressed, go out, I couldn’t do housework. I had very little support, certainly not the practical support I needed.   I had terrible meltdowns. It was only because my parents supported me financially that I didn’t end up homeless, instead they paid my bills on the flat I shared with my ex-boyfriend, not the most mentally healthy of situations but I just was not able to manage to move.

Autism saved me.  The only way I survived that year was a special interest in Harry Potter and by revisiting the fantasy land I created as a lonely teenager. I spent most of the time in my head daydreaming.

And then slowly I began to be able to do more. I ate more, I got up, I went out.  And at last I moved away and things got better. I went to back to studying, I made new friends. I also went back to drinking.

I never became the person I was before this all started. Before, I could mask well, I was someone who appeared socially successful, able to work, with plenty of friends.  Afterwards I became more reclusive, more scared, more excluded, convinced I was worthless and less than everyone else. I was scared of being myself and having ‘behaviours that upset others’ so my mask became a bland dull person who conformed as much as possible.  The only time I couldn’t keep that mask on was when drinking.  So I started daily drinking alone and fell down into another bad hole.

Eventually I stopped drinking and managed to function better, in terms of being able to work and live independently as well as .  But  I still burnt out easily, still was prone to breaking.

Occasionally I read about autism or ADHD and wondered.

Yet I couldn’t bring myself to suggest it to a psychiatrist again and I didn’t dare self-diagnose.

Then, 16 years after I first burnt out, in the wake of yet another suicidal bout of depression and a disasterous family holiday, I said to my psychiatrist “Why do I always upset people? Why do I get left out or I make people angry?”.  I didn’t often express such thoughts any more, I saw them as virtually a thought-crime.  But this was a professional with the right experience.  He saw the autism. That was four years ago.  Last year I was diagnosed with ADHD. At last I’ve been seen and heard.

Finding out I am autistic hasn’t fixed everything.  I’m still prone to breaking, to burnout and depression.  But the knowledge of autism means I can start to glue myself together like the Japanese art of kintsugi, mending a broken item with gold, so it is more beautiful than it was originally.

(Main image credit ‘Fractal Menger 3 D Geometric’ by TheDigitalArtist on Pixabay)



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