Buddhism, Autism and My Identity Crisis – A Series

This is going to feature as a sort of ‘taking stock’ of where things are now, for me. I have recently finished a solitary retreat where this kept coming up for me.

Some people might wonder why I feel the need to air my dirty laundry on the internet. I suppose there are two reasons, which are highly inter-related. Firstly, it doesn’t feel like dirty laundry – it just is what it is. Secondly, I’m on this quest to be as honest, authentic and as real as I possibly can. I want to reach as many people who are involved in my life with the stage that I’m at, as possible. It might put them in better stead to understand who I am, and where I’ve come from. It also saves me having to repeat myself. There are parts of this story that I have revealed before, to individuals and on social media. I feel as if, over the past few months I’m becoming more integrated – in the sense where these things are coming up, I’m trying to compartmentalise them, so I can begin to accept them and/or let them go.

Part of the reason I’ve been interested in talking about this was following a difficult conversation with a family member, one that I’ve been wanting to have for a long time regarding the various diagnoses that I’ve received in my relatively short life. Labels are just labels and really, they don’t mean very much unless you believe that parts of the human brain can be abnormal. Can they? I don’t know.

Labels become problematic, when with them they carry a sense of shame, a lack of understanding and you become stuck in a way of thinking and being, because of a label. Sometimes I worry that I’m becoming far too obsessed with autism and all its implications, but I feel like I have years of integrating to do that I wasn’t *allowed* to do in my formative years, before I can let this aspect of my identity go. Who am I? Which parts are me? Which parts are anxiety? Which parts are autism? Which parts benefit me? Does it all even matter? It’s part of a death of the self.

NB – I’m aware that I say the statement about labels with a certain amount of privilege. I do believe that labels are necessary and important insofar as they provide people with identity that they may need at that time and therefore access to a community and they provide people (sometimes) with relevant services and products to allow them to live a better life. I am also privileged in the sense that I do not suffer from a physical or intellectual disability, although I was developmentally delayed, it wasn’t to a huge degree. I did hit all of the important, and socially acceptable milestones, just a bit later. I think, in the autistic community, this is called “Aspie privilege” – I have the ability to write about my experience as an autistic person, and maybe if you’re neurotypical, this will give you a glance into my world, and the world of many girls with autism. However, I can’t speak for all of us. Autism is a spectrum. I don’t like using functioning labels because I believe that they are misleading. I am described by ‘professionals’ as being high functioning. I’m not always high functioning, it dismisses my low days, high anxiety, overstimulation, when I’m unable to communicate, and other experiences I talk about later in this entry. Similarly, I feel it’s really horrible to label some autistics as “low functioning” – perhaps because they are non-verbal, violent (although scary, not often meant), unable to use the bathroom etc. This does not make these people any less intelligent or capable.

My “disability” does impact my life in various ways and for a long time I was hugely ashamed because my diagnosis was denied to me, it was constantly invalidated because I could “make eye contact” and was “very intelligent.” So, really it didn’t matter because it didn’t impact the academic aspects of my schooling and it was largely unseen. That is also my privilege. I can function, relatively well in society, at least on the outside. Most of the time. The issue is some people seem to think that it is all the time and that I don’t ever require any support. When I’ve asked for support, I’ve been told I don’t need it and will eventually figure it out on my own or told I’m so lucky to be on the other side of the spectrum. Or I’ve been given well-meaning but useless support – access to an aide at University (she was quite rude actually) and access to a laptop when I already had one.

Around two years ago now, I was in discussion with my mental health nurse about autism and the implications. I have been so very lucky with the access to psychiatric services that I’ve been able to maintain. I’ve gone from having a diagnosis of unipolar depression, bipolar type two and suspected borderline personality disorder. I’ve been on medication and/or in therapy for most of my adult life. I was being treated for all of these things, but treatment wasn’t working, or was working for a short period of time. I had been misdiagnosed, more than once. Turns out I don’t have any of those things. I’m just autistic. It has its own comorbidities which can present like aspects of depression and believe it or not, borderline, but it’s not those things. Many professionals can’t diagnose autism in girls because all the literature was written about autistic boys. There are huge differences and girls are absolute experts in masking autism. You can research that if you’re interested, I’ll just be talking about my own experience.

I’m going to be looking at different aspects of autism and how they pertain to me. I think I’ll publish in parts so that it doesn’t become disjointed and/or too boring.

In the least manipulative way possible, I hope you care enough about me to want to be a part of my journey.  It feels important to me.

Lots of love.

November 2018 – On becoming “stable”.

blogThese past eight weeks have been brutal, horrible, long and just really not what I was expecting or wanting from the latter part of 2018. I have been suffering from depression, anxiety, suicidal thoughts and, at times crippling loneliness. I had been thinking at the beginning of every day: “Wow, this period of depression has been really long, I really should start to feel better soon.” However, days turned into weeks and weeks turned into nearly 2 months of feeling awful, with little or no break.

I’m writing this blog post, not to seek attention but more to document that I felt absolutely hopeless and that I’ve made it out of the other side. It is likely, especially with the diagnosis’ I have, that I will feel this way again. Half the battle is believing that you can make it out of it, maybe not stronger, but alive. I also want to document some of the things I did to try and feel better. They didn’t work right away, but part of fighting the beast will always be consistency. It is my hope that I help someone by documenting this nonsense.

On recognising your triggers

For me, this period of depression and anxiety was multifaceted. Firstly,  I was on the receiving end of some pretty serious bullying – some complete strangers actually made solid effort towards trying to get me dismissed from my job. (Thankfully, this has been sorted). Secondly, my ex girlfriend (who I’m still harbouring some pretty complicated feelings for) tried to come back into my life in a big way. Thirdly, someone I thought was a friend started spreading a serious lie about me, one which it actually looked like people were believing (despite the fact that it was completely outwith something I would actually do). Lastly, I was going through a spiritual crisis where I felt estranged from my Sangha and my meditation practice.

Now, two of these things were new (and therefore not known triggers) for me. My ex and my flux in my spirituality were things I knew how to deal with, or at least question and make peace with. The bullying and the lie were both things that hit me really hard and made me feel very alone at times, and stuck in a period of destructive thinking. However, I think I have learned plenty from these experiences now. I am full of gratitude.

On giving up control:

I firmly believe that the bulk of our problems are down to our expectations. Someone or something doesn’t live up to what we expected of it, and therefore we suffer. We expect to always be in control of our life, but control is an illusion. We can exact some influence onto aspects of our life, but we will never have full control of anything. I’m learning to trust that my past karma and the universe are at work to teach me what I need to know to be a better person in this life. Another huge part of this is not taking life personally, or anything personally. Particularly with the bullying that I’ve been facing, I’ve been trying to remember that these people are human, make mistakes and are also probably suffering a lot more than I am, (why else would they behave in that way)? When things happen, especially the kind of things I’ve been going through these past few weeks and the resulting mood, it is so easy to think that something/someone is against you, but, everyone goes through these kind of experiences at some point. I am trying to remember that life has seasons and it can’t always be spring or summer in mine.

On self-care and gratitude:

During this slump, I did something that I have never done before, something I thought that I would regret at a later date. I took between 4-8 weeks off most of the activities that I enjoy. This included hobbies and not spending as much time with the people that I love/usually make me feel better. In all cases, it has made my interest and friendships stronger, and infused them with honesty.

Most days, I forced myself out of bed to go to work. This might not sound like I was looking after myself and I was actually advised to take some time off due to poor mental health/stress. But, part of what makes me tick is routine and distraction, so I persevered and it turned out to be the best thing that I could have done.

A huge part of my self-care that has been different is that I’m finally accepting that I might need help at times. My brain chemistry is strange and at times unreliable. A few years ago, I came off all of my medication that would have some impact on my mental health and for a long time, I believed that being medication free was the best course of action for me. Two weeks ago, I agreed to go on a different drug (anti-depressant/anti-psychotic) that will hopefully help me manage some of these symptoms. This was a big thing for me, because I believed I would never need medication again and if (by chance) I did need it again, I must be weak.

I’ve been focusing a lot on gratitude and the amount of positive conditions that I have in my life. They are numerous. I have a (mostly) healthy body, the capacity to feel some pretty strong emotions – the bad and the good. I have some job security, I live with someone who loves me, (or at least tolerates me)! I have so many beautiful people in my life, who inspire me every day, people I can share everything with. I have an amazing spiritual community, I somehow get straight A’s at university, I can afford to do pretty much everything I want, I live in a country that’s free from war, famine etc etc… the list goes on! When I focus on these things, sometimes it leaves little room for suffering.

On loving what you can do for others:

Something that has also made a huge difference on my ability to cope and attempt to stay on this planet when things got really bad was/is the fact that I know that I have the capacity to make other people happy. When I’m unhappy, I can easily go into people-pleasing mode and aim to sort problems/do everything for my friends (you’ll probably recognise this behaviour if we see each other often enough). I’m trying to be mindful of this as a coping mechanism and a distraction. I love helping people, but I need to find the balance between doing good and taking my mind off/neglecting myself.

I don’t think there’s much else to say, apart from the fact that I feel stable for the first time in a long time. There’s such a difference in how I feel in conducting my every day activities. When you’re deep into a depression, it can feel like the world is against you and like it will never pass. However, at times I feel like I had some real perspective – that what is happening now is just my karma and conditioning working itself out, which (like everything else) is outwith of my control and that every emotion, no matter how horrible it is will and has to pass.

There are a (small) list of people that I am incredibly grateful for, who have seen me through this awful time. I am full of love, admiration and gratitude for you. Thank you so much for being my friend and for loving me, even (and especially) when I am difficult to love.

October 2018 – Lifestyle Inflation:

I’m writing this on Sunday afternoon, after having a week off. I have been filled with anxiety and sadness. I do struggle with my mental health, but I have not had a period of depression (I have a diagnosis (It’s been eight weeks)). that’s lasted this long since high school. I usually am able to put emotions on the back burner, but I’ve been feeling incredibly lost and as though I can’t focus properly on anything. It’s really been impacting my hobbies and day-to-day. I’m trying my hardest to come out of it. Despite all of that and having the cold, I have had a really productive break. I came up with some new tasks for the kids to do in my class, submitted my university course work, came up with a essay topic for the next 3000 word assignment and got rid of a good 5-10% of my possessions.

I have been dabbling in savings and looking at my financial impact on the world. With money, I have realised that I definitely live my life in a state of horrified anxiety. A part of this is that I’m not used to having a monthly pay-cheque or the (somewhat) security of a permanent job. So, when the money comes in, I worry about what I’m going to do with it (I mean, I need to do something with it, right)? so more often than not I blow it on stupid things that I definitely don’t need and DEFINITELY do not align with the image I wish to project into the world.

I came across the concept of lifestyle inflation – something that I’m guilty of.  Basically, spending just for the sake of spending because my income has gone up. I have been a pretty loyal follower of The Financial Diet for a couple of months now and the way Waleska sums it up here is just me to a tee, at the moment:

It’s interesting how easily lifestyle inflation crept up on me. I was living a perfectly good financial life. Earning, saving, spending, and making do with what I had. I wasn’t rolling in the dough before I had roommates and the extra income that came with them, but I was comfortable. As soon, as I had additional income, for some odd reason, I felt the need to shop more. Buy more, have more. It wasn’t like I was splurging on luxury goods. Instead, quite frankly, I bought junk. I had a small home office and that became cluttered with things I didn’t need. I clearly remember having so much stuff I began storing things in my garage! I had no children, no husband, and while two bedrooms were being rented out, the rest of the house was filled with my stuff.

To that end, I do have some savings goals in mind. I’m hoping to have £10,000 in my savings for the end of 2018 (at £8000 at the moment so may or may not be doable). My partner and I have been discussing putting down a deposit for a house – I think we are going to aim for June-July 2019. That will take away the need to pay rent, but replace the need to pay rent with the need to pay a mortgage… arguably better than aiding someone else in paying off theirs…

For the entire year of 2019, I want to partake in a year-long shopping ban, sort of like the one Cait Flanders did in “The Year of Less.” I’m already working on what that would look like, in my head. A big improvement that I have made is not buying any books (with the exception of an educational research book that I needed for uni). I want to continue that into 2019 and ensure that I read everything that I have on my book shelf, before committing to more to read. Something has definitely shifted though – a couple of years ago, if you’d asked me what I wanted for Christmas, I’d have been able to rhyme off a good 20-30 things. Now, all I really want is a specific 2019 calendar and a new journal.

I’m also taking the very attractive idea of taking up as little space as possible a lot more seriously. The idea of living in a tiny studio flat, with bare floors and white walls really appeals to me. However, as of now I am far from being a minimalist and definitely still have quite a bit to work on.

Peace!

Summer 2018 – What I learned on my first solitary retreat.

Going on a solitary retreat has been on my bucket list for a couple of years now. However, my mental health had been so wobbly at times, I never seriously considered it. Even this year, the whole thing was booked on a whim with the hopes that I’d be ready for it when the date finally came around. I had an inkling inside that I really wanted to go to the teeny-tiny island of Iona, having spent some time there a couple of years ago and sensing a special kind of energy. I booked the whole thing in January and pretty much forgot about it until a couple of days before I was due to go.  I think that gives an indication of how stupidly stressful and busy my life had become…

A very basic shrine to Padmasambhava

Then, I remembered how much travelling from Glasgow to Iona is a huge, unnecessary long (for how far it is) pain in the backside. A train, a ferry, a bus, and another ferry!

One of my intentions for the retreat was to completely disconnect from social media platforms. Something I’ve become aware of over the past couple of years is that I use my phone, especially social media as a way to switch off from the real world, as a way to procrastinate looming deadlines and as a way to combat my resistance to feeling ‘busy’ – I was moderately successful at that one – but more on that later!

The travelling to Iona from Glasgow is actually a bit of a pain. The train from Glasgow to Oban was lovely. I love travelling by train, generally, but the views are amazing. There are always tourists falling all over the place, hoping to get a camera snapshot of some beautiful Scottish scenery as the train whizzes by. I’m often so blown away that I’m so fortunate to live in such a beautiful country.  The ferries are wonderful, the sea is wonderful and I’m always so full of gratitude.

The bus is the worst part – this bus journey was particularly bad because the bus broke down and I actually suspected I wasn’t going to get to Iona that night, as there was a danger of missing the last ferry. However, it was okay because I met a really nice lady from Denmark, who made me laugh and we’d go on to have a cuppa a couple of days later, effectively nullifying my solitary.  The bus driver also knew the ferry driver and let him know that the bus would be late.

Anyway, the first thing I learned was that I have a huge tendency to over-pack and/or pack for every eventuality. My meditation pillow took up a huge amount of space in my suitcase. I had a bit of ill-will towards the man who rented me the Air BnB because he literally watched me struggle up the hill with my ridiculous amount baggage. I hate feeling unprepared or forgetting everything, but I know now to pack less for next time.

Here is where I stayed

I got to my little pod, three hours after I was supposed to and immediately burst into tears. I had anticipated several mental health wobbles and I was as prepared as I could be for them! I broke the first rule of solitary and phoned my partner to cry down the phone instead. However, it was a great idea – because I felt immediately better and more ready to face what was coming. The second thing I learned, therefore is, especially if you have a history of “wobbles” – you need to listen to what your brain and body need and what I needed was to talk to him and to take steps to nourish myself.

Homemade granola and fruit for breakfast. 

I actually managed to go through the whole rest of my solitary weekend without any other mental health issues. I actually had a pretty good and special time. I did a whole lot of nothing – I spent my time sleeping (without an alarm!), writing in my journal, meditating, doing tarot readings, taking part in devotional worship, stretching and going on both long and short walks. Even a couple of months ago, the idea of spending any amount of time in my own head, without distraction terrified me. But, I got into a routine pretty quickly and got to a place of self-toleration… maybe one day that’ll be self-love.

The third thing I learned was that Iona is a pretty terrible place to go if you’re planning to spend a period of time on your own. There are so many friendly people, everywhere. They all want to talk to you. There are amazing little animals everywhere. I also met Hanne Elena – the lady from Denmark I mentioned earlier. I didn’t go out of my way or even remotely try to meet her again. However, every time I left my little pod and went for a walk or run, I met her! So, finally bit the bullet and went for a cuppa with her in the little house that she was staying in. It felt right to go with her and we had good chat and food. She is an artist and she encouraged me to have a go at painting. My only memories of art is in school where 1. I drew a cup and my first year teacher laughed and 2. I passed Higher Art because I did a unit where I didn’t have to freehand draw – I traced everything. So, naturally I had a bit of resistance because “I’m crap at art” and “I can’t draw” but she encouraged me to paint a stone which I gifted to Marc when I got home.

My nursery project stone that I made for Marc

Another reason that it was hard to be alone was the fact that I met this little Highland Cow. His name is Afro and he was extremely playful.  I spent as much time with him as I could. I also spent Saturday morning in the community cafe having some lovely soup and cake and then I went exploring around the Abbey.

Afro

Overall, I’m glad that I went. I have a longer solitary booked in 2019, so this felt like a good warm up. I don’t think I’d go to Iona again, or if I did, I’d make more of an effort to stay inside.

One of the things you see when you get off the ferry!