Being capable doesn’t always equal having capacity

I’ve discovered a lot about myself the last 18 months. From doing nothing with my life post ankle fusion, to starting university and regular weekly work hours for the first time in years, my life went from 0km/hr – 100km/hr super quickly.

Is being really busy good though? Yes, as long as you find a balance – something I’m still figuring out.

When I sought out an updated autism diagnosis last year (I was originally diagnosed with Aspergers when I was 13, back in 2000, and life had changed so much I wanted a more “in the now” snapshot of my life), I didn’t expect to get back from the psychologist that I more fitted in a Level 2 diagnosis than Level 1 – the stereotype that Aspergers=Level 1 aren’t true. I mean, I knew as an average I fitted more into Level 2 than Level 1, and that there’s days if I were assessed I’d meet Level 3 criteria, but I was surprised that my psychologist didn’t just group me in Level 1 like most would based on the medical criteria. Autism is a Spectrum, and I know I move between it, and it’s really calming to hear my main psychologist agree with that.

My psychologist is a bit different than all the others I’ve had over the years, though. She really understands autism, and understands how and why I view the world differently, and does her best to support me to understand myself, so that I am more able to navigate the big complicated world we live in. No, she doesn’t understand everything, but I’m yet to find anyone who fully understands me, so…

…I’m sure you’re reading this trying to comprehend how I write like I’m speaking – ending a paragraph with a train of thought. That’s just how I like to write – I’m telling a story in each blog, and sometimes my brain does like to transition between main thoughts without finishing the previous one, so hopefully as you’re reading this you might be more likely to feel what I’m writing, as well as reading it…

…back to the main topic of this piece.

I can have capability but not necessarily capacity

One of the ongoing conversations with my psychologist the past few months has been around how busy I’ve been. That I (might be) taking on too much work, uni and other things to hide how anxious I am about current life uncertainties. I accept that statement. It’s really hard though, because it reminds me I don’t have the capacity to work full time, as well as study, and do other things, like socialise. Even if I take socialising and studying out, I don’t have the capacity to work full time. I really want to, and on the medical model I technically can, but I know I don’t have the capacity to.

My brain constantly runs really fast. Thoughts – good, bad, and curious ones, spin around my head like a washing machine throws around a sock. This means I get tired really, really easily. This tiredness results in reduced capacity.

Take uni for an example. I require a little bit of support to be able to study, and online is preferable because it takes out the different social interactions required by face to face classrooms, plus I communicate better in written form than verbal language, and I have the diagnosis paperwork to back this up.

When I get the support I need

I took on two units at a new university this year, having switched my degree slightly and taking some credits from my previous studies. The elective unit I chose has been really great – my tutor Sally has a personal connection to autism (I can guess what but I haven’t broken that student/tutor relationship to ask outright, so I’m leaving it with what they’ve told me), and the Unit Chair has created a more interactive and collaborative environment than most other units. I get assignment feedback from Sally via audio, which is more personal and interesting than just reading feedback; and we have weekly online “classes” to discuss the weekly topics, assignment questions, and interact with other students and our tutor. I’m lucky that Sally  has understood my life can be busy, and that I also get overwhelmed by classes that have more than a few students, and a couple of times she has arranged one on one sessions with me so that I can keep up to date with content, and ask questions; and also reinstated the quietest class of the week just so that I could be comfortable with my learning environment. This has been reflected in my two assignment marks being HD’s, as my accessibility requirements are being met, and I’m being supported to be the best student I can, without going outside the boundaries the tutors and Unit Chairs have to stick to.

When I don’t get the support I need

My core unit on the other hand has been the opposite. No online classes, no encouraged discussions between students. Being left on our own for the learning materials, and having to figure out how to do assignments on our own when the content is a lot more intensive being a core unit. The tutor is only online to respond to questins once or twice a week, and it’s just really disengaging. There was one week where I was linked up to another student to practice for an assignment, however….

…I sent the other student some info about me, as the practical task was to interview each other. I said I was autistic and had other conditions, and that I was happy to talk about this in the interview. The student emailed back “I’m sorry to hear you have a disability, but it’s great you’re not letting it affect your ability to achieve things”. I structured a reply about how I’m an advocate, and that I don’t see having disability as a bad thing, and that it’s inappropriate to say “I’m sorry”, and that the student should consider in the future how they respond to people. I cc’ed the response my tutor in to make a point. A couple days later my tutor for that unit emailed me and said “I’m sorry the other student is no longer available to do this assignment, please send me the questions you were going to ask them and I’ll give you feedback”. So not only did this student bail on me, I wasn’t given the opportunity to complete the task with another student.

Prioritising things I’m capable of

For various other reasons I really struggled with this unit, and a couple of weeks ago I decided to just flunk out. It’s been two weeks since my assignment was due for that unit, and I haven’t had any correspondence from the tutor, which really does sum up how inaccessible it is.

This shows that in the unit I have the required minimal support, and my expectations are met, I can do really well. If I don’t have these things I don’t do well at all. This reflects my previous studying experiences, where I’ve had high grades with a supportive teacher/class, and not so great grades in the units I haven’t had that support.

It’s not as simple as saying “P’s make degrees”, and that I “should be happy with just getting better than a fail”. It’s not that I’m angry I’m not getting constant HD’s, it’s that I’m angry and upset that I get lower grades based on the environment. That I know I have the capability to achieve higher marks, and that the environment leaves me being uncapable of achieving them.

I need to put my energy into what I’m good at. What I get value from. What doesn’t cause so much stress and anxiety. It’s this reason why I’ve decided I’m going to leave my degree at the end of this Trimester. I know I can come back to it at a later point if I want to, and get the credits for the units I’ve already completed. For now I want to focus on advocacy work, mentoring, writing, and maintaining my mental health.

I’m prioritising what’s important, based on urgency, impact on my life, and my capability. My psychologist has really helped me understand and come to terms with this. She is supportive of me dropping university – even though she knows I am capable of doing it, she understands why I currently don’t have the capacity. We’ll work together, and maybe one day I’ll the capacity to manage less accessible environments. Maybe.

But for now, I’m looking after myself. Being aware of my limits. Trying to avoid burnout again, as the burnout I had earlier in the year was from not paying attention to my limitations by doing too much in too short a time following surgery.

I have to have surgery again in June. I’ve planned for it though, and I am putting steps in place to make sure I have plenty of time to recover, and am not committing to any engagements until July to ensure I can physically, and more importantly mentally, recover. When it comes to surgery, the medical world only assesses one’s physical capacity, and don’t consider mental health or other neuro-differences such as being autistic, in deciding whether someone is capable of being operated on. I need to remember to plan recovery to include the neuro-differences involved in recovery, as well as the different mental health recovery I’m likely to have.

I’m always learning. I hope you learn something from reading my stories.