Letter from 25-year-old Robin

Possibly I will try to write more this year than last year’s two posts. Possibly. 

Dear 26-year-old Robin,
It’s funny how much I still psych myself up to write these letters. In the beginning there was so much uncertainty over whether I’d be there to read them in a years time. In a sense, that uncertainty is still there, because none of us can know when one day will be our last day or what will happen a few minutes down the line. But that heavy grey cloud no longer hangs over my head. There is no longer that sense that if I am not here reading this next year it will be because I have taken my own life. There are still struggles and there are still doubts, but I am more Luna now than I have been since I was a child. My baseline is brighter. Instead of a constant grey fog, my mental skies are clear. Sometimes a pale wintery blue, sometimes a deep, warm summer blue. Sometimes there are storms, but they blow over, they’re weather and not the sky itself. It’s hard to put my finger on exactly what has changed, it’s more that I feel less empty, I feel like I can greet myself as a friend.

Maybe reading letters from my past selves is trepidatious because they list hopes I have since dashed. I couldn’t cope with the long shifts on Ambulatory assessment. Nor could I cope with the heat of Day Case Unit through the summer heatwave. I failed a placement and at the time it was heartbreaking and a part of me is still angry about the way it happened. But it made me make the decision I had been toying with all year: to transfer to mental health or not. I transferred. I still have nearly six months left of Second Year because of it. I’m no longer in the cohort with my friends. It doesn’t matter. It was completely the right decision, so in a way I am grateful that those events transpired. I have forgiven myself for what feels like giving in, because I am on the right path.

My first mental health placement was CAMHS. I have found what I need to be doing. I have found what I am good at. To say I enjoyed it would be the understatement of the century. I wanted to get up and go in. I looked forward to work the next day. I felt so appreciated. There were moments when I was genuinely asked for my opinion on patients by other clinicians including the psychiatrists. Suddenly being autistic was an advantage, because it meant I got it. It meant that all these years of struggling with mental health, of researching and learning obsessively could be put to use. I did over 100 extra placement hours. I missed it when I left. I hope you still have that drive. Being back at uni is hard. I am still so nervous about my next placement and placement 5 because I know deep down that I don’t want to be on a ward and I will struggle with it. But I am determined, because I know where I want to end up.

Over the last year, that subtle change has spread. I stopped tracking meals because when I track I know I start to obsess. Over the summer there were moments when I caught my reflection and realised not only do I look like myself, I like the way I look. At the beginning of the year I started doing RED January. When I signed up, there was a part of me that was thinking about getting abs. Getting fit. Getting my body lean and perfect. When I started doing yoga in the morning, I realised I was wanting to do it for longer not for my abs, but because I loved it. I could relax into poses because my mind was calmer. After January, I hit a stumbling block with the usual Pre and post menstrual stress. I am trying to get back into it, because it helped. On the subject of exercise, I got my brown belt at Jado and it was one of the biggest achievements of my life. I have since taken a break because I struggled with getting to Advanced class, I struggled with the change and I struggled because my one track Aspie brain had focused on nursing and not ninja class. I do intend to get back to it, because I do want my black belt and for so many years I have held onto Jado as something that I haven’t quit before the finish line. Talking of reaching the finish line, on the 24th of August last year, just after I turned 25, I passed my driving test on my first genuine attempt. I still don’t enjoy driving, but I feel more confident now. I know that I can drive and I know that nobody is perfect.
In some ways I have been more creative over the last year with altering clothes and making puppets, but I have written less. It isn’t so much that I lack the muse, it’s that I lack the motivation to sit down and write. My mind has been so wrapped up in other things. Even in my endless daydreams I am a nurse now.
Socially I am much more relaxed, and my relationships are stronger. Narnie is not my only port of call. Twice last year I had the pleasure of seeing Willow, I hope there will be more occasions in the year to come. There are still times when I feel like I’m sitting under a harsh spotlight watching myself from the outside over analysing what to say and how to say it. Those times are becoming rarer and I am becoming better equipped at navigating them. I have learned to take myself as I am.
Hopes for the year:
I hope you’ll have stuck out mental health nursing
I hope you’ll be doing placement 6 with CAMHS (and maybe even have a job lined up!)
I hope you’ll be back at Jado
I hope you’ll be doing yoga everyday
I hope you’ll have written a short story or maybe more
I hope you’ll have completed the DBT course
I hope you’ll have done some ACT training
I hope you’ll be writing a sentence a day
I hope you’ll have moved to Appletree
I hope you’ll have stopped picking your skin

I look at how far we’ve come and I am so proud. I do things in my own time at my own pace, as Luna would. I hope I will only continue to live, learn and experience the ocean of life.

I love you,
Robin

Brain Glitch

Is it any wonder that only 32% of autistic adults are in paid work compared with 80% of the non-disabled population and 47% of the disabled population? There are obvious barriers, like the fact that social communication is an essential skill regardless of your job role. People who can’t play office politics are automatically on the backfoot.

 

Then there are more simple things. Like the lack of understanding. Or even more than lack of understanding, the refusal to listen. The dismissive attitude. The problem with “everyone is on the spectrum somewhere” is that it justifies this ignorance. One of the best analogies I have heard is that autism is a different operating system. Autistic people are Apple Macs, neurotypical or non-autistic people are PCs. Most of what you can do on a PC, you can do on an Apple Mac, but sometimes the way you go about it is different. You often need to download operating specific versions of programs or apps; a PC version won’t work on an Apple Mac and vice versa. There are some things that PCs are better for than Apple Macs and some things that Apple Macs are better for than PCs. If you’re used to a PC, you might find an Apple Mac hard to navigate. Expecting an autistic person to process things the same way as a neurotypical person is like expecting a PC program to work perfectly on an Apple Mac. It’s not going to happen.

 

Let’s extend the analogy and imagine that all the processes that go into day to day life are programs on your operating system. Some are functional programs like ‘sociability’ and some are stressor programs. For example: I am a student nurse. I have been on placement on a ward with no central air conditioning, the ancient ineffectual unit and many fans do little more than blow hot air around. The ward is incredibly hot, sticky and close. Imagine that ‘it’s hot’ is a simulation everyone is running. For most people (PCs), ‘it’s hot’ is processed into feeling uncomfortable and more irritable, but it doesn’t have a huge effect on their processing power and they can run their other programs as normal. For me ‘it’s hot’ is processed into feeling claustrophobic, dizzy and uses so much processing power that my other programs start to glitch. I recognise when I am glitching and there are a few tools I can use: I can take rescue remedy, I can drink water, I can take myself away for a few minutes and breathe, I can take some pressure off by reducing some of the other programs I am running and if it gets too much I can remove myself from the situation.

 

The problem is that PCs attitude is we are all experiencing ‘it’s hot’ and everyone else has to deal with it, therefore I should too. Even though my experience of ‘it’s hot’ is different to their experience of ‘it’s hot’. This is what I was told when I requested to leave because I felt that ‘it’s hot’ was affecting my processing powers to the point that my other programs were glitching too badly to function. As a result, I pushed myself to lower the power on some of the glitchy programs, I was less sociable, and I volunteered for less in order to continue to function while ‘it’s hot’ was running. This was manageable until other power draining programs came online too. At this point, I was in a difficult position, because I knew I was glitching, but I also knew that if I asked to leave, that would be considered unprofessional. I took breaks. I shut myself in the toilet and sent out SOS messages to friends to try to pull myself through. I ultimately decided I still needed to leave because the glitching wasn’t improving despite my best efforts. As I was going to have that conversation, I was asked to do something. I foolishly thought I could hold of any major glitches until after I had completed the task, having already been pulled up on not doing things when I was asked to. If I had been allowed to carry out the task without interruption, I might have. Unfortunately, I was interrupted by a PC correcting me on a petty thing, which triggered a major glitch.

 

A glitch is a reasonable analogy for a meltdown. When a computer has a glitch, it freezes or shows a blank screen or flashes lines of colour. When I have a meltdown, my rational self freezes and no amount of clicking is going to bring it back until it’s had a chance to switch itself off and back on again. When I have a meltdown, I am not in control. In this particular incidence, I said I was going home and proceeded to leave. My patient was safe, the PC nurse was with her. I didn’t swear, but I do appreciate it was unprofessional. Hence why, if it had been acceptable, I would have left earlier or not gone in at all.

 

What has now happened is I have probably failed placement and I will probably be suspended from my course. Because all people see is the major glitch and the major glitch counteracts every good quality I have because it is dramatic. Nobody wants a perfectly useful Apple Mac that will suddenly show the blue screen of death without warning. My mind has the processing power that its got. There are some environmental influences that can take the pressure off and free up more space, like an external hard drive for an Apple Mac, but ultimately once the limit has been reached, my mind will glitch.

 

Glitching is not going to go away, as much as I wish it would. Therefore, it becomes a matter of working with the processing space I have to avoid glitches. It’s worth keeping a perfectly useful Apple Mac which you know glitches when it has 6 applications open at once, because you know you can run fewer than 6 applications and avoid glitching. I would make a perfectly good nurse and with the right adjustments, I won’t glitch. I don’t expect neurotypical people to know what is an isn’t going to make my mind glitch. What I would like is to be listened to and respected when I tell them. At the moment all I get whenever I ask for an adjustment to be made or to leave early because I can feel myself about to glitch is ‘how will you cope when you qualify?’. Then when my mind glitches: ‘your mind glitches and that is unacceptable. You must stop your mind from glitching.’ But equally ‘everyone else is running all these programs without their minds glitching, I realise your operating system is different, but we are all different makes of laptop (even though we use the same operating system) and everyone else manages so you should too.’

 

As a student, I have no control over where my placements are. When I am qualified, I will choose a job in which the environment maximises my storage space. The more storage space I have, the greater capacity I will have for dealing with stressor programs. However, as a student, the environment is entirely outside of my control, so I have much less control over outside influences on my storage space. That means even if I do as many things as I can to maximise my storage space, it is still going to be more limited by the environment that I am in. Therefore, adjustments are more necessary to prevent mind glitches than they will be when I am qualified.

 

I don’t expect neurotypical people to understand how my mind works. I expect them to accept that I do understand how it works and to respect my needs without judgement.

Dear Anxiety

 

I wasn’t sure about putting this up. It’s not a wander through the snow globe. It’s something I wrote while the glass was frosted up and I was ready to turn my back to it hide. I was tired and running away from scary things has always been my preferred method.

Dear Anxiety,

How many things do you get to take before I say no? How much of me do you get to erase, to steal, to break, before I stand up to you?

You are not stronger than I am. You do not get to silence every positive thought and every aspiration I have. You don’t get to drown me out, because I will learn to master every one of the tricks you through at me. I will find new ways of balancing. I will find a way around you. I will not drown. I will not sink and wait for someone to pull me out. I am stronger than I was. I am stronger than you will ever be. Eventually you will run out of curveballs to throw. But I won’t. I have more imagination than you do. I will not let you take any more from me. I will learn to regroup quicker. I will learn to strategize more thoroughly.

I am more than you. I am not just a body for you to inhabit. I am not your puppet. I will get up, every time you knock me down. You don’t get to flatten my thoughts, put my dreams into greyscale or silence my emotions. I don’t have to lie back and listen to your narrative of what makes life easy.

I won’t let you take any more. These thoughts are mine. This life is mine. You don’t make the rules. I do. I do and I am telling you no. I’m telling you I won’t give up. I will find a way around this. I won’t give up this placement. I will find a way to make the next placement easier. I will pass my driving test. I will get my brown belt. I will write a novel. I will stand up for myself. I will make puppets with Pearl. I will finish this degree. I will be a nurse. I will travel the world. I will live independently. You can’t stop me. I won’t let you.

Robin

Egg Donation

Today I discovered I am not allowed to be an egg donor.

I was considering it because I thought why not? I’m young, healthy and, as far as I know, fertile. I don’t need all my eggs and the thought of someone sharing 50% of my DNA coming to find me in 18 years’ time doesn’t bother me. So why not? It could help someone who was desperate for a child of their own and I am not naïve enough to think that everyone who wants a child and can’t have their own should just adopt, because it’s not that simple. I contacted Oxford fertility by email to find out if it was a possibility. I mentioned that I hadn’t had children, there’s a tiny risk of infertility following egg donation, so I wasn’t sure if that would count me out. I mentioned having Asperger syndrome.

It wasn’t the lack of children/potential infertility issue that ruled me out.

They cannot accept me as an egg donor because “there is a potential genetic link with Asperger syndrome.” Correct. Although the strength of heritability is questionable. Twin study concordance rates are all over the place. Sibling concordance rates are relatively tiny. Most autistic people have NT parents.

The lack of strong evidence that my eggs will produce autistic offspring isn’t the thing that bothers me most. What bothers me is that this is an issue. I am not against genetic screening. If I was the carrier of a disease which meant my potential offspring would have foreshortened, painful lives, I could completely understand the logic of being rejected for egg donation. But there is this double standard with autism. On the one hand, I am told it’s a difference, not a disability, that it should be ASC for ‘autism spectrum condition’ instead of ASD for ‘autism spectrum disorder’ because, I am told, I am not ‘disordered’. It’s funny, that the same institution, the NHS, which has told me this, is now telling me they can’t accept my eggs because my DNA might give my offspring a slightly higher chance of having this ‘difference’.

Which is it? A difference that should be celebrated, or a disorder so terrible that the risk of passing it on rules out an otherwise healthy person from egg donation?