Monday 21 July 2014

Autistic dreams & other stories

Two people are standing outside the loos in Starbucks in Preston. One of them hasn't seen another human apart from their partner in quite some time. The other of them came around from a general aneasthetic 4 hours before.  Prior to this moment, the conversation has covered quantum mechanics, the wool corridor that is still the Leeds Liverpool canal, sine waves of brain activity and function and where trashy novels intersect in those waves, and cancer. We're waiting for the partner of one of them.

'Humans eh' says one to the other, piercing them with eye contact. 'Completely unpredictable' they pause for few seconds 'until they're not'
'Yeah' the other replies 'Sheep'
'They can be so fascinating, and yet so boring'
'Schrodingers people'

There is laughter and reflected back at me is the light. It's important that light. It is, I think the thread through this post that I suspect will become very long indeed.

Wind back 12 months.

'I don't know who I am, who are you?' is looping around and around and around in my head. I write it down on a post it note and post it to my Instagram. None of the answers that come back help. It doesn't interupt the loop. Around and around it goes.

The therapist tries. To her credit, she accepts I am not stupid, just broken. I tell her I've done CBT and currently it's like posting a paper origami boat into a tsunami and hoping it will help. My mind is a tsunami. It is sucking everything, absolutely everything  into a massive wave and then that wave is crashing down over me.  It feels as if pieces of my brain were literally being swept up, churned into a seething mess and then hurled down onto a stone beach where they smash into pieces.

I am in a constant state of terror. I don't know if at the time but I've almost literally terrified myself to a stand still. I can't walk. I can't talk. I can't verbalise or articulate or write or tweet. I am literally a piece of meat. The electrics have either gone out or there is a super cell stuck in there, stuck in my brain.

Underneath all of this, of course, is the bubbling narrative of failure. I failed. I let every one down. I was supposed to be kicking ass and instead I was quietly dying, all the systems going off line, giving up, giving in, all the fight sucked out of me by cognitive absence.

That sounds like depression doesn't it? Doesn't it just. It's not. It's far more complex than that. I, it turns out, am far more complex than that.

Depresssion sucks everything from you. And the state of this being is similar for most of those who suffer from it. @markoneinfour has kept me anchored without even knowing it. But the cause of the depression, I believe is different for everyone. Everyone has different triggers. Everyone suffers but everyone I think also suffers differently. I am thankful, so very thankful to my GP for understanding that sometimes she has needed to leave me alone, sometimes she has needed to let me come to her of my own accord and ask for pills, and sometimes she has said the wrong thing and I've backed away for a bit, needing time to think and work out and rationalise.

So why the terror, I suppose is the question. What triggered it? And I'm sure the easy answer would be GDS, would be travelling up and down the country every single weekend, living in two places at once. That answer would make a lot of people happy. But it's not the truth.

When I was 12 years old my world changed. I got my first period. My mum didn't talk to me about periods. She didn't talk to me about anything. She managed to apologise earlier this year for not being able to cope with being a mum to two people. And that I'd beent the one without a mum, essentially, came as no surprise to either of us. The apology came as a massive shock. I suspect to both of us.

The point? I don't ask for help. There has never been anyone to ask for help from and so I have essentially worked through my life with the same attention to detail and focus that I apply to everything.  It makes me selfish. It makes me focussed. It makes me stupid and oblivious to the disintegration of my own state of mind. I am so close to the problem I can neither see it nor feel it.

Normally, my other half can spot when problems are happening and it's a standing joke that he acts as my personal people interpretation module. I didn't have that in London. Oh boy did I not.  I should have worked it out when a colleague decided the only way to tell me how fucked off with me she was was to write me a letter telling me then reading it to my face. I should have worked it out when I couldn't find anyone in the 200 people office, instead needing to gchat people to ask them where they were. I should have worked it out when the amount of meetings I had in the day inversely affected what time I needed to go to bed (9pm most nights). I should have worked it out when I lost my appetite. When I couldn't sleep.

Some of those things sound like depression.  But not all. Not all of them by any stretch of imagination. And the penny didn't even drop when I took the 'Reading the mind in the eyes' test and got something like 8 out of 40 and I guessed those 8. And having to look at nothing but eyes for 20 minutes made me feel sick to my stomach and quite panicky.  Not when a colleague sat me down and asked me if I didn't realise I couldn't deal with people sitting opposite me and interacting with them and felt much more comfortable sat next to people and even my hobby involved talking to people next to me - riding bikes.

It's all so glaringly obvious to me in retrospect. Not to others though. 'I am autistic' I say and they say 'no you aren't, you can't be'.

Well here's the thing. I am. The 45/50 says I am. The trained qualified clinical psychologist says I am. But truth be told. Tony Attwood and his absolutely mind blowing explanations of how autism and especially Aspergers affects women rather differently than men told me I was.

I've been diagnosed with Autistic Spectrum Disorder, Depression and Anxiety in the space of 6 months. 'I don't know who I am, who are you?' still runs through my head. But alongside it runs something else, an understanding, an ability to cut myself some slack. The person who read me the letter didn't understand why I was coming across one way when I was intending to come across in a completely different way. My boss didn't understand. No one understood, least of all me. It turns out, in the end, that the prevailing theory is that I am allergic to people currently. If I spend any time with anyone but my other half, I pay for it. I am exhausted, often for days after. We think that this is because I am doing so much processing trying to fit in and not stick out as being different that I've worn out my brain a bit. While I was in London I was trying to do the following:

  • Process the interaction scripts for 100+ people
  • Remember the faces and names of ditto
  • Get myself dressed and out of the house looking presentable (not smart or anything, just enough to raise too much comment)
  • Eat properly when I can't cook
  • Sleep properly and enough to recover from exhausting days when sleep has always been an issue, insomnia being the least of the problems as it would suggest I'd gone to sleep in the first place
  • Manage a workload that was at the high end of the scale 
  • Attend at least 3 meetings a day at one point, resulting in high intensity interaction for 3 hours every day
  • Remember pretty fundamental processes like going to the loo, drinking enough in the heat etc
What I'd like you to do, is think how your friends daughter/son who is autistic would manage all that. Now I want you to imagine you don't know there is anything wrong with you and you're sat in the absolute best job on earth that hundreds of other people want and you don't know why you're struggling. Now I want you to imagine your support network has disintegrated and you're miles from your boyfriend and you hate speaking on the telephone with a passion unrivalled because you don't know when you're supposed to speak in a conversation even worse than you don't know when you're face to face with someone.

Body language. Knowing when  to talk in conversations, knowing when to shut up ,when to leave, when to arrive, when to leave someone alone....yep, I bet some of you are nodding your heads right now.

The simple fact is, I was burning through massive amounts of processing power, just trying to look like all of you. There was nothing left to do my job. I remember someone commenting loudly in the office that I looked exhausted every evening.

Well I was. This is why. I was, as servers go, running at max. The line was at the top all the time. It was so bad by the end I couldn't drop out of fight or flight. I'd been in it for months by that point. It was normal. I burned through all my reserves, I burned through everything. Right down to the bone.

And then I snapped. 

So if you don't mind, considering where I've been, how I've felt and what I've learned, don't reply to this post with 'You can't be autistic'.

I can, and I am. And I am slowly but surely learning how to not spend my entire waking existence pretending I am just like you. I am not just like you. My brain is not like yours. I do not see the world the way you do. I like that. I don't care if you think this is awful and a waste of talent and time. I couldn't give a flying squirrel.

I am autistic and I am proud of it. I see such beauty because of it. But I also see such agonising sorrow. So yes I have depression. Is it any surprise? But I also have hope. I have some slack with which to cut myself. I have a thing to choose to disclose, and I choose to disclose it here. If you think you can still work with me and understand that this actually changes nothing in terms of my intelligence, my speed, my pattern matchiung, my life loving, question asking joy, thank you.

If you don't want to know me, or talk to me, or work with me any more, then I am sorry. Sorry for you. Good bye.



    Many of the people I know are neuroatypical. Something like 10% of people suffer from a mental illness at some point in their lives (me included) while some people are just happily different.

    What's sick is a culture where it's still very hard to talk about this kind of thing to the people around you.

  2. sheesh, just did a long comment and it vanished... just want to say, keep the faith, you are on your way to the light. xxx

  3. I recognize those tsunami waves of crushing thoughts, the exhaustion, and the final goodbye. Thank you for articulating what many of us have not yet been able to.

  4. Thank you. Me too.Aspergers. still scarred from my last job failures. Ptsd. Nightmares of not fitting in. Finally hearing the voices of my fellow female sufferers. Thank you again!

  5. Thank you. Me too. Still scarred from job failures. Life PTSD. Love hearing the voices of my fellow Asper girls.

  6. ound this via a link in the guardian on line glad i did beautifully descriptive of how it feels to be Autistic and how knowledge of autism sets you free, that it don't require pity that you out there don't have to be sorry for us, that all that we need is your understanding of us and it, don't be fooled by the name autism spectrum disorder, as many of us me included see it as autism spectrum condition its a condition of mind different not faulty... thank you for sharing this blog Louise :)

  7. Lou, you are a darling!!! Thanks so much for sharing this and perhaps I will soon find the courage to let the world have a glimpse into my own little self-imposed dungeon. Don't know though. Really like it in here alone in what Paul Tillich called a "world of empty self relatedness." If I could just get this mean old world to go away, damn it!!! If it would go away then I would not have to take the route Hamlet suggested when he pined of the temptation to "flee to a nutshell and there be the king of infinite spaces."

    Enough about me. Once again, you are wonderful. Thanks so much.

  8. Hello There! :)

    I felt at home after having read your blog. I am not sure if I completely understand what you are going through.. but I am actually here to say that maybe I do. Some of the things you said resonates with what I have been feeling for years now. I have never felt like a normal child. I used to be and I still am extremely sensitive to sound. I think even i tried fitting in with the crowd but honestly after a point it just did not work out. I do think I have a learning issue. i have never been able to cope up with the speed at which things were taught in class. I am so lost and have always been. Someone recently told me (one of my friends) that I could be autistic. I read up more about it.. some things did align. I know there is something major I still don't know about my self. In this hope I went to see a therapist. I told her how i felt. I am told I am a case of child abuse and that I have now developed a Perfectionist syndrome. Yes, the child abuse bit has affected me majorly but that can't be it. I have been overly attached to my parents. I was abused because my folks wanted me to perform better.. however in the process child abuse happened. I felt so much pain when my folks could not understand how I felt.. that I can't really express. I knew it came from a place deeper. Not faring well in exams did not hurt me so much. Not even close. I always found it difficult to express my self and I still do. I just can't seem to talk. I had about 10 sessions with my therapist.. I was hoping I could find out that there is something that could explain this. But it did not. I relocated to another place and I lost touch with my therapist.

    I am writing to you with a hope that I'll be able to figure out myself better just the way you did and that I could be less harsh to myself. Is there anything you'd advise me to test or see a specilist for the same? I think I am tired too. I am trying to lead a normal forever and somehow it is the most difficult thing. No one really gets me. I have got all sort of advice from trying meditation to having less expectations, etc.
    But sometimes I feel people don't get it and then I just give up and believe that I am just not good enough. I hope you read this. I hope you will reply back.

  9. Dear Louise, many heartfelt thanks for writing and posting this. My experience is similar to yours, and for years I struggled to understand why I'm "failing" when I should be "kicking ass". From a high flying academic (physics) into a catatonic, unresponsive mess, who is almost unable to do anything but the most basic of human functions.

    And yes, figuring out that I am on the Autism Spectrum, and discovering Dr Attwood's work, helped tremendously. I also depend a lot on my partner for "translating" human behaviour to me. He's a biologist, so he explains it the way David Attenborough would, LOL.

    I'm still in the process of recovering from a severe "burnout" but it does get better. I highly recommend reading "Unwritten Rules of Social Relationships" by Grandin and Barron.

    We see the world in ways NT people can never imagine. No wonder we get overloaded. Be nice to yourself, Higgs Hugs, and all the best :)

  10. Hiya,

    I suspect I may be on the autistic spectrum and I went to my doctor to talk about it. I had NEVER seen her before and I was very nervous. I brought it up and she said I 'didn't seem autistic' from talking to me for the past 10 minutes. I broke down into tears because I'd been trying very hard to not seem rude, to make eye contact and say the right thing! When I talk to people about my suspicions I get really worried about things like eye contact. It was really hurtful because my tics had been going crazy throughout the duration of the entire appointment. It was so horrible.

    I guess I'm just really worried about going back because I know there's SOMETHING going on in my head that isn't 'normal'. I literally never leave the house other than to do things that are necessary (work, going to the bank, Post Office, etc). I do have 'friends' but I don't see them or relate to almost all of them.

    Do you have any advise for someone who suspects they may be on the spectrum when it comes to talking to a doctor? I'm really scared about going back.

    Thank you for taking the time to read this.

  11. wow...kindred spirits? I have yet to get a diagnosis because most doctors do not think of it as being something an Adult has if they weren't already diagnosed as a child. The problem is my generation (prolly yours too)...they didn't readily know of such things. I snapped about 5 years ago...but I could feel it coming...I could see the deterioration in my interaction with others. I could see how I was such an outcast within my own family gene pool and community...and I was rebelling...People blamed organic/physical issues I was having...but I knew/know my emotional lack of well-being actually manifested into those issues. You can "think" yourself sick when you aren't mentally well...The Matchbox 20 song comes to mind "Unwell"...I hope that you find a peace within yourself comfortable enough for you. To hell with them...I have found mine regardless of whether they want to agree or not...

  12. Thanks so much for this post. I read it when very ill earlier this summer and have just got round to writing about it. Wishing you well!

  13. Thanks so much for this post. Have only just got round to writing about it. You've really inspired me!

  14. Great article, very inspiring