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)



Wearing my mask #TakeTheMaskOff

If you’re reading this, I’ve finally overcome a case of writer’s block and written a new blog post! It’s been a year since I last blogged, I’ve thought about taking my blog down, but people occasionally like one of my posts and say they found it helpful so I’ve left it up.

This post is for #TakeTheMaskOff a campaign raising awareness about masking. I’ve been thinking a lot recently about masking and how much it affects me. It also relates to the doubts I’ve had about my diagnosis that I’ve written about them on this blog before. This post, like all my blog posts, is not trying define the experience of all autistic people. Not everyone masks and for those who do, their experience may be different. This is just my experience.

My mask was built on shame and it became such a part of me, I didn’t know it was there.

I was different from the beginning. As a baby I only lay on one side, so I looked strange for the first few years of my life. one of my ears lay flat on the side of my head and one stuck out. I sucked my two middle fingers, not my thumb like normal children. I was hyperlexic and talked early but didn’t crawl or walk for a long time and when I did walk I was clumsy. I wouldn’t go to bed until I’d seen the moon. I was cute, I was quirky, but there was something different about me. Nobody could quite put their finger on it. My mother later confessed that she thought to herself ‘Why can’t my child be normal’.

The world set about teaching me to be normal.

Sometimes the lessons came in the form of reprimands or corrections, sometimes gentle teasing, sometimes outright bullying. Sometimes they were meant lovingly, sometimes more unkindly. Sometimes the lessons weren’t overt, I’d be left out or ignored. The lessons came from everywhere, from home, from teachers, from peers, from friends’ parents.A lot of the lessons were very small, like a gentle “don’t do it like that, do it like this”. Some were larger humilitations, like bullies threatening to kill me; like being made to stand up in front of the whole school every lunch time. My sensory sensitivities made it impossible to eat school meals and I was punished for this. Sometimes I didn’t understand what I’d done wrong.

All these things added up, incrementally erasing my sense of self like erasing parts of a picture, a pixel at a time. You may not notice those missing pixels at first but gradually they add up.

I wanted to hide who I was

I’d get a heavy feeling of dread in my stomach when I realised I’d done something wrong or put my foot in it. I’d try to cover it up as much as I could, try to find explanations for my behaviour that would make people understand and not be cross, laugh or say nasty things. I did all I could to stop this from happening. I’d try to copy people and imitate their behaviour, so I didn’t get in trouble or get rejected.

When puberty came, the lessons got harder and the shame worse. I found the sensory experience of secondary school coupled with hormonal changes overwhelming. I retreated into myself, finding it hard to speak. I was bullied and isolated. I’d get home and meltdown. I did things and behaved in ways that I didn’t like. My parents believed I could control the meltdowns. They thought I was just being a difficult teenager and reacted with anger. I had no support or help. I took all the blame and all the shame.

I was convinced I was hideous and unlovable. Other children knew it, my family knew it. The shame was like a dead weight and masking was a way of papering over those shameful parts of me.

My mask was constructed of imitation and echolalia.

It was built grom things I learnt in books, magazines and TV shows. It was glued toether with fragments borrowed from other people’s personalities. I learnt to suppress my own opinions and likes and convince myself to like what others liked. As I grew older, I found the numbing effect of alcohol helped, to the extent that I felt broken and incomplete sober.

As the years went on the mask became so much a part of me that I forgot it was there. I just lived with an all pervading fear that somehow I’d be found out, that there was something dark and shameful in my soul. I had long periods of depression, I became suicidal but I carried on masking, even in psychiatrists’ offices.

Diagnosis didn’t stop me masking

When I found out I was autistic. I realised I masked. I just didn’t know how deeply my mask had become part of me.

Instead of feeling free to be myself. I subconsciously tried to adapt my mask. I didn’t realise that was what I was doing but I spent time working out how fit in with autistic people. What persona should I adopt? It was automatic for me to see myself as inadequate and to try to take on aspects of other autistic people, whether in the media or people I met. And when I failed at living up to the ideal, I felt more shame and felt the need to conceal my failings

I didn’t realise I was masking but I knew I wasn’t being completely authentic. I just had a niggling feeling I was faking being autistic. Which only fuelled more shame and doubts about my own autism. It was a painful place to be in in, knowing on one level I’m autistic but yet doubting it.

Seeing the mask

It’s only now, after the 4th anniversary of my diagnosis, that things have shifted.

This year I started to take a step outside the mask. I got involved with running a local autism group. I find it very anxiety-provoking and I’m also not sure how effective I am (being of the ‘couldn’t organise a piss-up in a brewery’ school of executive functioning). But I’m standing up and saying I’m autistic and I’m doing this, I started to accept my own autism and stop feeling the need to mask as an autistic person..</p

I read about research into how camouflaging and masking is a risk factor for self-harm and suicide for autistic people. That was my life story. Somehow, despite the fact that this finding is sad, seeing my experience, my depression, my suicidality and self-harm corroborated by research made me look deeper at how I mask and see it more clearly.

Now I’ve started accepting myself as an autistic person and not feeling shame The autistic world isn’t like the neurotypical world which often tries to hammer people into similar shaped holes. Autistic people are all different shaped, and while non-autistics may try to create a hole made of assumptions and ableism that they think autistic people should fit into, autistic people don’t fit that hole. I fit perfectly into my own autistic hole and I don’t need to feel shae because my experience is not like some other person’s

I can’t take off the mask completely. It’s been too long now. I don’t know who I am without the mask, without all the borrowed fragments of others. But I can stop it hurting so much. I don’t have to live with shame. I can make the mask more functional. Rather than hiding something shameful, it could be something that has utility and that allows me to exist in a society that is still a long way away from autism acceptance.

It will take a long time to heal the shame and learn who I really am. I can’t go back to being the innocent child who loved the moon that I once was. Maybe it will take the rest of my life. But I feel that I’m on the right road now.

Doubting and questioning again 

I haven’t updated my blog for 3 months. There are many reasons for this, such as depression, executive function but the one I want to talk about is that I’ve been through a long period of doubting and questioning that I am autistic. Again. 

I’m through it now, but it was a painful and damaging experience. 

I don’t know if I have doubts as part of the distorted thinking of depression or as a natural consequence of late diagnosis. Maybe I doubt because some people I care about don’t accept my being autistic and others I can’t even tell for fear of a negative reaction.  Maybe I still see autism in terms of stereotypes and have a lot of internalised ableism. 

Whatever the reason, it’s not a helpful way of thinking. 

My doubts stopped me attempting to connect with other autistic people and get support. I retreated into further into silence. I find it hard to have conversations and feel part of the community anyway because of anxiety but my doubting made it nigh on impossible. 

I felt like a poor example that it’s over three years since I was diagnosed and yet I still doubt I’m autistic. Other people seem so sure, even those who only found out about being autistic more recently.  I admire and envy their surety.  

I dealt with it alone and isolated playing the doubts and confusion over and over in my mind until I wanted to yell at my brain to shut up. 

I ended up back in the abominable position of believing myself to be a failed neurotypical with no possibility of an autistic solution to problems. It’s a lonely, painful place to be.

Then, as always happens, I was presented with incontrovertible evidence that I’m autistic. I had a series of meltdowns and shutdowns (some of which might have been prevented had I accepted my autism). I also went to a support group where I tried out various sensory supports which made me want to purr. Being around autistic people there also helped. 
At last I have that sense of acceptance again. I am sure I’m autistic and the knowing grounds me and makes me happy.  I feel less alone even without communicating with anyone. 

I’m sure I’ll doubt I’m autistic again. It seems to be a cycle I go through. I need to find ways of challenging that thinking so I can get out of it sooner. Talking about it here is the first step but it would be good to find people I can talk to when I’m in it.  It does pass but it would be good to have help. 

There may be other silent doubters out there and I wanted to say you’re not alone. Whether you have a formal diagnosis or are self-diagnosed, even though through periods of doubt and questioning, if you know in your heart you’re autistic you will come through them. 

Book Review: Odd Girl Out by Laura James

When I was about nine, I described something I did at home to a classmate (I’ve forgotten what, but it required a degree of extraversion). “I can’t imagine you doing that” she said “you’re too quiet”. “I’m one of those people who is quiet at school and loud at home” I said.  “What people? Those people don’t exist” she sneered, no doubt confirmed in her view that I was weird.

This was one of many incidents that made me feel an outsider, an odd girl out. It was only in my forties, after my Asperger’s diagnosis, that I found that ‘those people’ DO exist. One of the places I find them is in books like Odd Girl Out by Laura James, Laura recalls being quiet at school and a chatterbox when just around adults. A ‘quiet chatterbox ‘she called herself repeating it over and over in her head adding train noises because it sounded like a train.

Odd Girl Out is a beautifully written and candid memoir tracing the year and a half after of journalist Laura’s autism diagnosis in her mid 40s.  It is honest and unflinching but never depressing or negative as she reflects on her past and begins to comes to terms with her diagnosis, trying to pick out which parts of her were her and which parts were borrowed.

Reading the book has brought up so many memories. I just want to go through it and say “that’s like me” and “that happened to me” and “that” and “that”.

There’s so much in the book I relate to.  From the feeling of uncomfortable outdoor shoes at school to being punished for not being able to eat disgusting school dinners, to living with anxiety and constant fear. From special interests and learning to copy other people to needing routine and things a certain way but being disorganised because of executive functioning problems and much more.

Like me, one of Laura’s special interest is reading. Until I read this book I wasn’t even sure if reading was a special interest. It’s kind of like breathing for me. It didn’t occur to me reading the same book repeatedly, 10, 15, 20 times was unusual – well it’s not if you’re autistic. Like Laura I get to the end of a book and start again from the beginning.  I read fast (I finished this book in three hours and have read it twice now). People often say to me “Have you finished that book? Already??” as if fast reading were some sort of crime.

We are a similar age and read many of the same books . Laura describes reading Jilly Cooper as “you would an instruction manual for a washing machine” looking for answers to life. Jilly Cooper’s Rutshire Chronicles were part of my guide-to-life reading too. I also recall a family holiday in Wales before I went to a new school. I discovered a second hand bookshop selling old Enid Blytons and quickly became obsessed with Malory Towers. I read and re-read them in the same way Laura describes, looking for instructions to follow for my new school.  When we talk about that holiday, my mum says “Ah yes, Malory Towers”.

I’d recommend this to anyone. For non-autistics it will aid understanding of what being autistic is like and challenge stereotypical views of autism. It should be required reading for anyone who has ever said “she can’t be autistic” or “you don’t look autistic” as it shows how someone can be successful, superficially look like everyone else and yet still be autistic.

I think its main value will be for autistic people. I found reading the book an incredibly validating experience and left me feeling less alone and more sure-footed as an autistic person. I unexpectedly found tears in my eyes unexpectedly on a number of occasions.  I’m sure a lot of other people will get the same validation. I can see it being the book that makes someone who once thought “autistic” an alien word see that, actually, it applies to them.

It helped me as well. When Laura said, a year after her diagnosis she realised she was still “a cat, judging myself by dog behaviour”, it made me sit up. Not just because I use that metaphor too, but because three years after my diagnosis, I am still judging myself by “dog behaviour”  and perhaps this is the root of my depression.

I”m sure I’ll read this book again.  When the world feels spiky and hostile, when I’m crushed by the weight of expectations, when I’m sick and shaky from sensory overload, this book will be a friend to turn to. I’ll relax in to it like a warm comforting bath finding understanding and reassurance that I’m not alone. Odd girl out no more.


(Thanks to Bluebird Books for a review copy of the book)


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

Bravery, cowardice and suicidal thoughts

Trigger warning: Please read with caution.Suicide, suicidal ideation, suicide attempts, suicide plans. 


I haven’t blogged for a while.  I have a number of half written posts in my drafts folder but haven’t been able to finish them.

The reason is, I’m still depressed. The same depression I wrote about at Christmas has persisted and got worse. I suppose you could say it’s reached crisis point.

Continue reading

#Depression – one autistic person’s experience

I am depressed. ‘Tis the season for it, just before Christmas.  Just to warn you this is a distinctly uncheerful post about depression with a content warning for mention of suicidal thoughts.

I often get depressed close to Christmas, having lost my bearings and my spoons in the race to get ready for the festive season.  It seems the happier everyone arounds me is (or pretends to be) the lower I get. Continue reading

How #LockedInForAutism is hurting #ActuallyAutistic people

(CN Autism described as being locked in a box, autistic people being locked up, abuse of autistic people)

There’s a freakshow coming to your local Tesco supermarket. People are spending 50 hours locked in a glass box. They are Locked In for Autism. It’s a metaphor for autism. Because autism is just like being locked in a glass box in a supermarket.

Only it’s not. Of course it’s not. This is a campaign created by people from UK charity Caudwell Children who are not autistic and that does not represent the experience of autistic people. In fact, this misrepresentation is offensive to the vast majority of autistic people and only serves to perpetuate damaging stereotypes. Continue reading


Notice Unreasonable beyond this point

“You’re being unreasonable”

My ex said that to me on a regular basis when we lived together. I didn’t always understand what he meant.  How I was being unreasonable? My autism was undiagnosed at the time.

After we split up, I mostly lived alone. I could do what I wanted and nobody would call me unreasonable.

Now I am living with my mum and I’m being unreasonable again. Continue reading