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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Research vs reality

Trigger Warning: Suicidal thoughts plus mention of eugenics

After I wrote my last post, I was surprised that a) I’d found the energy to actually finish a post and b) I felt a bit better. Just sharing those thoughts with the world, even if no-one read them, helped slightly loosen the stranglehold depression had on me. And people did read. Thanks so much to those who liked and commented.  It made me realise I’m not as alone as I thought.  I’m going to try to write more and see if it continues to help me so here I am. Apologies for the depressing content…

Anyway, whilst browsing on Twitter, I came across a Psych Central article: Suicidal Thoughts 10 Times More Likely in Adults With Asperger’s (It’s based on this 2014 study of people diagnosed in Simon Baron-Cohen’s CLASS clinic. I read it, looking for answers, help and understanding. But really it just highlighted the fact that while research may be finding out more about our lives, when it comes to help

Continue reading

Diagnosis and misdiagnosis – why you should trust your own instincts

It was 1999 in a psychiatrist’s office somewhere in the depths of Charing Cross Hospital, London.   I’d been sent to see him for a potential diagnosis of Attention Deficit Disorder (ADD). The psychiatrist seemed bored or irritated. I was not sure what. I couldn’t, and can’t, read people.

I fumbled awkwardly through the reasons why I thought I had ADD. I told him of how I liked to daydream, not being able to organise or keep things tidy, I told him about the terrible meltdowns I had and how my friendships and relationships seemed confusing.

I was there because I’d self-diagnosed. It had started with a breakdown. One day I’d suddenly found I could not go on any more. I couldn’t get out of bed, put on my face and put on my mask, go to work and act normal. I just could not do it any more. I was very low, defeated and confused. Continue reading

Downward spiral

Reader beware. This is not going to be a cheerful post. It may have an unhealthy sprinkling of self-pity.

It looks like I’m going to have to leave my job. I’m in a job that is wrong for me. My mental health is suffering. I disclosed my autism and mental health to my boss and at first it seemed positive. I spoke to him again today. Didn’t manage it very well, I found it hard to get my words out. But the upshot was that, what i thought was positive, that I’d found some help at work (although I’m still waiting for the referral to come through) made him question my ability to do my job. He wondered why I’d need help to do my job.

And to be honest, I don’t think I can do my job to the standard he wants. My executive functioning is not up to it and probably my people skills aren’t either. It’s causing me anxiety. I wake in the middle of the night fretting about things I haven’t done.  And I told him this.

We’re going to review it after my week off next week but I suspect I know what the outcome will be.

Partially I’m relieved. I’ve hated the feeling of not doing well. I’ve spent a year dreading Monday morning.

However, overshadowing the relief is the stench of failure.

My career was the one thing that I thought I’d succeeded at. I haven’t managed to have a successful relationship or a family of my own. It’s been 10 years since I last had a relationship. I don’t own my home. In fact, although I’ve lived independently for most of my adult life, since I moved south last year I’ve been living with my mum. I’m desperately lonely but I’ve been doing better at losing friends recently rather than gaining them.  I can’t seem to connect with anyone.

Now I’m going to lose my job too. And it fucking sucks. I tried my best and my best wasn’t good enough.

This is the reality of autism for me at this point of time.  Rejection… loneliness… failure. I did warn you there was going to be self-pity.

I just feel so alone with it all though. I need support, but my referral hasn’t come through. I need a friend, but there’s no one to talk to, and even if there was, I’m finding it so hard to express myself that I’d probably just say I was “fine” because I can’t get the words out.

At the moment I feel like giving up. Getting drunk. Stopping trying.  What’s the bloody point in it all.

I’m stuck in a downward spiral.  Getting lower and more negative.

Oh I’ll pick myself up. I’ve found myself at rock bottom enough times in life to know I always find a way out. I can’t quite see it now but I’ll find my optimism wherever I’ve misplaced it.

Get through whatever happens with my job.

Maybe next time I’ll go for a job that plays to my strengths. I was just so desperate to get away from an open-plan office that I jumped in without thinking this time.  Maybe next time I won’t be so bloody stupid.  Maybe open-plan offices will go out of fashion. Maybe I’ll somehow overcome all the executive dysfunction that stops me from setting up a business.

But right now it just all feels too hard. To0 big a mountain to climb…

 

Stress and shutdown

I haven’t blogged for a while or been on Twitter. That’s because I crashed.

Broke down. Refused to work. Rebooting doesn’t help. Doesn’t make the error message go away and the operating system start.

It had been building for a while.

Work has been stressful for months. I’ve been taking on too much for myself and blaming myself for being inadequate. I’m a manager with few managerial skills and poor executive function so I find planning and big pictures difficult.  I am good at figuring things out, completing tasks, creating.

On top of it all there was the referendum and all the bad news that just goes on and on.

Things just built up and built up. I found myself becoming isolated. It was impossible to blog or tweet about it. I just didn’t have the words. I stopped trying to communicate online. I just kept battling on, hoping things would get better.

One day, I noticed the symptoms of an impending shutdown.  Talking was hard – it hurt to find words.  My executive functioning was worse than ever.  I found my morning routine hard to follow.  My spatial awareness was bad, I walked into people on the way to work. The world seemed louder than ever.  The label on the back of my top rubbed against my skin, itched and made me feel sick.  And on top of that my emotions were running high.  I had a feeling of dread in the pit of my stomach. But it wasn’t a day I could just closet myself in the corner and get on with work.  I had to attend meetings. Talk. Arrange things.

I somehow got through most of the day. Pushed everything inside me. Tried to stim unobtrusively in meetings. Fidgeted, trying to pull my shirt up so that the offending label didn’t touch my skin.

Then at the end of the day, when the meetings were over, I received an email that was the final straw and I had a meltdown.

Normally when I have a meltdown at work, I take it to the toilet where I’ll sit and rock and cry.  This time I couldn’t control myself. I am just relieved I didn’t have a full meltdown. The full blown angry, scary meltdown. I didn’t shout. I didn’t hit myself. I didn’t throw anything. I just cried. Loudly.  And I have nice colleagues. It just seemed like a stress reaction to them.  They comforted me, trying to help.

And then after the high emotion of the meltdown, I felt nothing. I thought I was OK. I felt no emotion. My lovely colleagues were solicitous, concerned about me, but I was fine.  I thought everything was OK again. The situation that had caused the meltdown was resolved.  The only clue I had that I was still feeling stressed was when I closed my eyes at night and my worries overwhelmed me.

It was only after last weekend when Sunday night came around and work loomed again that my mind said NO.  I am not doing it.  I was suddenly overwhelmed by a huge amount of anxiety and stress.  Could not go on.  Could not function. Could not prepare for work, could not go to work.  Couldn’t communicate.

Is it depression? Anxiety? Stress? Shutdown?

I think it’s all of the above. Feeding into each other.

I got anxious and stressed.

When I’m stressed my sensory problems, executive functioning, communication become impaired.

This leads to depression as I can’t do so much. I have difficulty communicating and have more arguments. I also find work gets harder and harder because I can’t cope with any noise and my already feeble organisational skills get worse.

Then if I can’t have a break, I become more anxious and stressed, the world gets even louder, communication even harder. I have meltdowns over the smallest thing, leaving the house is impossible. Functioning at all is difficult. I become more and more depressed, more anxious. And then a moment comes when I cannot go on at all. I just can’t function.

That’s what happened last week.

Total system failure.

I’ve had a week off now. I hid away and didn’t do much.  I’m feeling a little better now. The break seems to have helped a little which indicates that this time it’s a stress-related shutdown, not a full-blown depression. Time to pick myself up, dust myself down and go on. Quitting isn’t an option.  Not yet.

I now have to navigate new stresses. The awkwardness of returning after sickness. I hate being unreliable. I also don’t know how my boss will react to my having time off for stress at an inconvenient time for the business. I don’t know if it will put my job in jeopardy. How can I manage my work better so I don’t get so stressed again?  I am still terrified my mental health will get too bad and I won’t be able to manage work at all.  Been there before, don’t want to again.

All I can do is try and manage my stress. Don’t let work get on top of me. Try and ask for help. Get time alone.  Go to bed early. Exercise. Stim. Spend time on my interests. Look after myself.  Eat well.

I’m not sure it’s enough. I don’t know if more is needed to change to stop it from happening again.  But I also don’t know how to go about it.

 

Walking into lampposts – disclosing autism or hiding it

I want to stop hiding my autism.

I had a friend who was partially sighted. At the time I knew her, she did not always want to be identified as visually impaired and often refused to carry a white cane. She bumped into a lot of lampposts.

I am just like her because I don’t disclose my autism, only the lampposts I bump into are metaphorical social lampposts. They give me less of a headache but still leave me in psychological pain. I try to do the right thing but it backfires. I upset people. I blunder around. I feel stressed, drained and miserable because I spend so much of my life trying to look normal.

Take what happened last weekend

My mother fell over and I had to take her to the hospital. Although I was feeling overloaded and out of energy after a difficult week at work, I managed to find reserves of energy in an emergency situation and I coped well.

The emergency department was hard though.

We had a long wait to see a doctor. The waiting room was busy and noisy with bright lights and humming vending machines. We were not given any indication of how long we were going to have to wait.

I don’t mind waiting when I have a clear indication of the time involved but with an indeterminate wait in a hostile environment, I became anxious and began to fret that we’d been forgotten.

I didn’t want to make my mum’s day any worse by having a meltdown but I was very stressed. I tried to hide it but it was obvious to her I was getting anxious and she sent me out a couple of times to give me a break. She felt guilty about ruining my day by falling over and I felt guilty because I wanted to be calm and support her but I was having trouble controlling my anxiety.

Eventually I went to check we were on the list. I didn’t express myself well and, I think, came across as an impatient person wanting my mother to be bumped up the queue. This probably didn’t go down well with the busy nurse. I heard other people in the waiting room whispering about me.

I was left feeling ashamed of myself and worried I had behaved badly or been rude (although this was not my intention).

Mum was OK, thank goodness, nothing broken, but the experience left me worn out and I had a bad meltdown a few days afterwards.

If I had been open about being autistic, would it have been any better?

I could have told the staff  I’m autistic and it would help me support my mum to know the length of the wait and that we’re definitely in the queue. Maybe they could even have found us somewhere quieter to wait. It would not have been too much trouble for them and it could have made the difference for us.

I would have been calmer. I could have just settled down and read my book. I could have supported my mum and not given her the additional worry about me as well as the worry that she had broken her arm.

If I had a visible disability, it would have been obvious that I needed support. Because I don’t have a visible disability and because I default to hiding my invisible disability I don’t get the support I need. Support which would help me support my mum.

But in order to get my needs met, I need to communicate them. One of the key autistic traits is problems with social communication. At times of stress, when I need help, my communication skills are not up to the job of explaining my social communication disorder in a way that would give me the help I need.

It’s a catch 22 situation.

If people around me were more aware of my autism, somebody might know how to help me. Because I don’t explain about it, they don’t know. Even my mum who knows I am autistic didn’t realise my anxiety was autism-related. She knows I have trouble in that sort of situation and is supportive but doesn’t know why so she can’t communicate it for me.

I could get an autism card that I could show in times of problem. I haven’t bothered to get one because I haven’t got round to it and also because I feel I can cope.

I can cope. Until I can’t. Then I hit a lamppost.

I have a lot of fear around disclosure.

Will people treat me differently? Will they talk down to me? Will I appear weak?

And the big one: What if they don’t believe me?

My autism diagnosis is important to me. It has given me a sense of self after years of wandering in a wilderness of doubt and confusion and not having a clue about who I am.

It has changed my life. I don’t want to have to justify it to anyone.

That’s why, even though I spend a lot of time reading about autism and thinking about it, I don’t often talk about it in real life.

When I have disclosed to family and neurotypical friends, people haven’t understood. They’ve told me stories of their autistic relatives who are different from me. They’ve asked if there’s any treatment. They’ve talked about the bullshit diagnoses that psychiatrists come out with, in an attempt to comfort me. They’ve told me I don’t look autistic as if that is a compliment.

They don’t really understand how validating the diagnosis is to me. And I don’t have the words to explain it properly. I tried to write a blog post to show them to explain it and after about 15 drafts I gave up.

It feels less painful just to rely on my ability to pass as neurotypical. It’s what I’ve done all my life.

But I started this post by saying “I want  to stop hiding my autism”.

And I do.

I don’t have to stop hiding my autism. My partially-sighted friend had the right to use her cane without being judged but she had an equal right to chose not to use her cane and not be judged for making that choice (this post is not intended to judge her in any way). The consequence was she walked into lampposts but she knew that would happen. I have the right not to disclose my autism but I know this means I’ll still walk into metaphorical lampposts.

I feel I want to disclose because I constantly feel that I’m one lamppost away from a massive mental breakdown at the moment. I’m stressed at work and the pressure of appearing neurotypical is putting a strain on me.

I need to stop hiding so I can support my mum. I need to stop hiding for my mental health. Passing, pretending to be someone I am not, is damaging. I hold it in, appear controlled and calm but inside I am full of turmoil.

It doesn’t mean I have to do a big coming out declaration The drama queen in me is drawn to that but the more sensible side in me wants to do it a little at a time.

I started by talking to Mum about it. She listened. I’m not sure she’d be in a position to help me in an anxiety situation but at least she knows why I get some anxiety in situations like the hospital.

I’ve downloaded the form to fill in for the autism card.

The next step is to talk to the wider family.  I’m not sure how I’ll overcome their objections yet, but I will try.

One day I want to be completely out about my autism. Put my real name to my blog. It will be so freeing after spending my life feeling like I always have to hide parts of myself. I want to be honest. I want to tell people who I am.

I’m still not sure exactly how I will get there. I’m scared of doing it and there will be plenty of lampposts to walk into on the way, but it will be a huge relief.