Having a "me"

I've been wanting to write this post for a while, but I'm not entirely certain of what I want to say, so please bear with me!

It's a post about being a "me": existing as a person or specific entity present in the world of other specific entities. This is something that most people probably take for granted most of the time, but a truth that I have often struggled to accept, or done my best to ignore, consciously or otherwise.

Even as a child I could not bear being conspicuous. Reading aloud at school was terrifying even though I was an advanced reader, being picked on to answer a question (because I NEVER volunteered) was my worst nightmare, having my music practice observed (just the presence of another person in the room, or even the house) made me angry and fearful and even the acknowledgment of my having completed some action or made some choice made me at the least uncomfortable. I sometimes find it intrusive when people use my name. When I'm really stressed out and can't have the control or invisibility I need, I have recently realised I just disappear. My body is there, doing what has to be done, but I'm not really in it - I have relinquished all choice, feeling, control, and thereby, "me", because to try and maintain a part of it or be present while lacking those things is too painful.

I always knew I was different from other people and that other people often knew this too, and being different is generally experienced as being wrong. I learnt to fit in well enough to avoid being a complete social outcast, but for many years I was very much clinging on to the perimeter of inclusion with people who were hardly the embodiment of "accepted" themselves. My goal in life was to go unnoticed.

All this is hardly news to me, and I am fairly sure that it has been a conscious goal through childhood and adulthood. When I received my diagnosis of autism I finally had a "reason" for why I was different and as I had grown older I had found a small number of friends who I truly fit in with. I had the longed-for acceptance and belonging and an explanation of why it had always been so difficult.

How wonderful to go unseen

Yet I retained this need to be invisible. As I worked through therapy recently I was aware that this was one of the functions of my mental health disorder. It was driven by a desire to be entirely insignificant, unnoticeable and to the outside world non-existent. That way you can't cause any problems, you can't be at fault or fail, and you don't hurt. Of course this is nonsense, and I did all of those things a thousand times more because of my condition, but those were the beguiling promises it made me.

Through therapy I have been trying to entertain the idea of a "me" being allowed to exist. Complete with potential for pain for others and myself and inevitable imperfection. I often find it difficult even to write or speak in the first person (even as this is written!), but I am gradually beginning to tolerate the existence of my emotions and to accept what I do or don't do, whether it is what I was aiming for or not. And then to show compassion to that "me" that has been allowed to exist. (It turns out my psychologist wasn't lying when she suggested that accepting things I don't like about myself might help them to gradually be needed less. Counterintuitive propaganda I thought, but there is definitely something in the whole acceptance, compassion, nurturing thing. I hate it!)

My battle with this idea really struck me after I read a post on social media over the New Year period. It stated that "Your wellbeing should be your number one priority. Nothing else is more important." I turned this thought around and around in my head and couldn't make sense of it. Something was wrong with it: it didn't seem to add up. I couldn't work out if it was supposed to be true or not, so I consulted Mr Peggy. He seemed to think that ultimately it probably is true. I'm still not sure (discussion welcome!), but it really made me aware that I still have a strong resistance to considering such a high value on my wellbeing even though I have changed a lot.

Then I began reading a book on "Exposure Anxiety" and my goodness, it resonates in places (I've only got to about page 30 of 300-and-something!). It was mentioned in the afterword of Donna Williams' Somebody Somewhere (second of two autobiographical accounts of Williams' life with autism and her journey from "her world" into "the world") and sounded interesting, so I popped it on my Christmas list and have begun to read avidly.

We disappear at any hint of discovery

Williams defines Exposure Anxiety as "an involuntary social-emotional self-protection response that is increasingly understood as a crippling condition affecting a high proportion of people on the autism spectrum." "Exposure anxiety makes it difficult to dare 'expressive volume' in a directly-confrontational (self-in-relation-to-other) world." "Exposure anxiety is about feeling your own existence too close up, too in your own face." (Williams, D. Exposure Anxiety, The Invisible Cage 2003, 10-11.) It produces aversion, diversion and retaliation responses and can present in many ways, just as each individual with autism is different, but can include difficulties in making decisions, fulfilling needs, being unable to perform under observation tasks which are well within an individual's skill set, speaking through other people's words (echolalia), being very controlled or controlling, and a myriad of other issues.

It has nothing to do with Exposure Therapy used to treat various mental illnesses, and I'm not sure that it is a widely-acknowledged "thing", but I think it can be a useful way of understanding aspects of behaviour in some autistic people, and the suggestions given for supporting such people certainly have merit. I see a large overlap with Pathological Demand Avoidance (PDA): though perhaps a difference in motivation, the mechanisms and presentation can be similar and helpful responses may look alike.

Perhaps I will write a separate post once I have finished the book, but I found it an interesting concept given my musings on why I find it so difficult to have a "me." (Which I still want to call a "you" because that is much less uncomfortable!)

So here's to "me." Me is a bit intermittent and only appears when she can face it, but we're seeing more of her as time goes on. Just don't tell her if you see her - she'll probably evaporate into thin air!

PS. You can probably tell her afterwards, when it's over because then it's less intense

New Year Post

For the past couple of weeks I have had three or four pending blog posts floating about in my head, logically resulting in no blog posts actually being written. So I have sat down to try and disentangle them and transform them into vaguely intelligible form!

I'll start with the expected "New Year - looking back - looking forward - with a touch of sickening sentimentality" one. And then I promise I'll get back to autism! Some interesting things I've been thinking about to try and figure out enough to condense into bloggery... anyway...

As I have taken stock of my adventures with Brian during 2018 I have been pleasantly surprised by a few realisations. When I compare my current state with the Peggy of a year or a year and a half ago, I am experiencing things I never believed I would actually experience, and neither was I sure that I wanted to. Some of these changes have even come about in the space of the week or two that this post has been swimming in my mind, forming and reforming itself to keep up with my changing perspective.

A year ago I was working 50% of my full time job, only going in for half days and finding that something of a struggle. When I returned to full time I battled anxiety attacks most days at least once and spent an awful lot of time crying in bathrooms. This month I took my first day off sick and since September have only had two incidents at work that required support from others. Not a perfect clean record, but progress I could not dare to imagine a year ago.

Progress in recovery for my specific mental health condition (which I don't discuss on this platform) has flourished lately. The months and months of hard graft working for what I didn't believe I wanted is finally beginning to pay off. Sometimes I genuinely believe that getting "better" actually is better. Just the last week or so I have felt the first breaths of freedom from my disorder. I have hope of a life beyond: the life that I had wished I dared to believe in but couldn't risk.

I am learning to treat myself with compassion. To accept the days where I need to go at my own pace, not shower until lunch time, wear joggers and snuggle down with my pets. To be kind to myself when I “fail” or fall short of my perfect ideal. To turn down the social occasion without (with less…) guilt if I need to, to do what I can not what I think I “should.” To ask for space or time or explanation when I need it.

I am learning to participate in my own life, to risk making choices or allowing my preferences to show. To let the feelings happen. It hurts a lot. I chicken out very often. I don’t like it. I prefer the safety of numbing and ignoring the feelings with destructive behaviour. But I know it doesn’t work. I’ve tried it. It’s not sustainable, and it’s not the life I want to live.

To get this far I have had many months of therapy from a psychologist who has helped me understand myself, my “what”s and “why”s and how to help myself, and most importantly, shown me that I can and am allowed to help myself. Her consistent voice is beginning to counter that of the ED and tip the balance of whom I believe.

This being the NHS, our sessions are about to come to an end, and I am trying to take the lessons I have learned and allow myself to feel the fear and sadness that this brings. In some ways, I’ve only just begun to really be able to talk about the things that matter, and with another couple of months I could be better enough that I would be equipped to keep going. This lady has heard things I doubt I will ever utter to another breathing being (as well as enabling me to utter things to other breathing beings that I thought I never would utter!), and I have invested much into allowing her to help me. She has helped me a lot. I won’t see her any more, and all that knowledge will go away with her and I will be left with the understanding and skills she has shared, to go forward my own way. It’s a lonely, scary and sad prospect. I hope I will do her proud. And I hope that if I don’t, I will forgive myself, pick myself up and keep on trying.


And the wonder of the thing is that in just the few days since I wrote the last four paragraphs, I have grown in hope, in confidence of the possibility of that hope being fulfilled, and in assurance that I am on the right path and I want to be on it. I honestly didn't see this coming, and especially coming so quickly. To have that inner reassurance (and the amazing support of some stalwart Peggies rooting for me all the way) and strength before I finish my therapy is a completely unexpected gift that I couldn't be more thankful for. I'm under no illusion that I won't come across setbacks and crushing doubts as Brian fights back, but I know that freedom can exist on the other side and it is worth fighting for.

So here's to a year of stubbornly practising self-acceptance and self-compassion, exploring and enjoying the experience of allowing the stalwarts of Team Peggy to support me, and seeing how many breaths of freedom I can breathe.