From Darkness Comes Light: Diagnosis Dilemma Part II

It may not surprise you to know, if you’ve followed my blogs so far, with frequent references of struggling to understand the world and vivid sensory cross-overs, that I have suspicions that I may be autistic. I’m not entirely comfortable to give myself a label because, whilst there is autism in the family, I haven’t had an official diagnosis and there’s something about self diagnosing that feels a bit wrong.

However, my eyes have been opened to the possibility through reading and talking about the other women who have had diagnoses later in life. The most notable of these accounts is from Cat McGill. She writes in a way that I find utterly engaging, educational and amusing. If you’ve not read Cat’s blogs, I can thoroughly recommend them – just to gain a deeper understanding of other people’s life experiences more than anything.

I relate to Cat on so many levels. I’ve known her for a few years as friends on Facebook but this year we’ve spoken more and grown closer. She’s one of the few people I can talk to about the things in life that confuse me – mostly to do with communication kerfuffles and sensory overloads. I’ll message her usually along the lines of “this happened – is it an autistic thing?!” and 100% of the time she’ll get back to me with a “oh hell yes it is!”.

Another friend of mine, Trudy, has only recently been diagnosed with ASD. She’s been a close friend for a number of years now, and I’ve always felt I can relate to her in ways I can’t with others. There’s a way she relates to the world that I can get on board with and we’re always trying to find the best way to understand each other.

Understanding myself better

I’ve read A LOT of stuff from friends and people online about their experiences of autism as an adult. I can relate to most of it. The way I sometimes express myself verbally, the verbal processing which doesn’t come naturally, masking in public to ‘pass’ as a neuro-typical (NT), cyclical anxiety and mental crashes (which are actually just burn outs), autism ‘shutdowns’, high-functioning vs low functioning states… there’s a lot out there and I’m yet to understand it all.

But the thing is, it all seems to make sense so far. The realisation has crept over me in the last 18 months. I started out with the uncomfortable feeling that “oh well everyone’s a little bit autistic” or “everyone seems to be self diagnosing as autistic these days – I’m just a band waggoner” and then I began to see the error of my ways in thinking that. 

The thing with autism is that it’s not just one or two issues, it’s a collection of neuro-divergences that make up a diagnosis. The best analogy I’ve come across is Cat’s ‘mixing desk’ analogy – whereby each channel on the desk relates to an autistic characteristic – and the fader can control the amount of that attribute a person experiences. (Do go and read her fantastic post where she explains it much better than I’ve just done!)

The fact I’ve come to this conclusion for myself is because I have collected conversations which seem to tally up and make sense to me. By sharing my experiences with other autistic women, comparing them with their experiences – it fits the jigsaw puzzle that is my life. There’s something in it. And most of all – it’s enabled me to learn more about how I can better deal with the world.

Overloads and shutdowns

When I had completed the anxiety work with my hypnotherapist, the freedom I felt was immense. I had an immediate release from the shackles of dealing with it on a daily basis. 

But, it became apparent I wasn’t free from the mental crashes and the need to hibernate regularly. Every 5-6 weeks I was experiencing episodes where I wasn’t able to communicate effectively, lacked all energy and motivation, and basically became a low-functioning mess. I didn’t understand why this was still happening to me. This was the old me I was trying to escape from – this is what the anxiety used to do to me.

It was a conversation I had with the lovely Gill Loomes earlier this year which signposted me to ‘autistic shutdowns’ and ‘high functioning vs low functioning’ behaviours. 

In order to live and work in the world, I experience intensive periods of high functioning activities. These include high mental energy activities like teaching, leading workshops, performing, composing important emails, negotiating, managing a busy schedule. 

I’m naturally an introvert so in order for me to conduct myself efficiently and socially in these types of activities – which I enjoy by the way – I have to put in enormous amounts of energy. This always leaves me feeling mentally drained and physically lethargic.

Predictably, periods of high functioning activities will lead to shutdowns – sometimes up to a week – where I will be in a ‘low functioning’ state. During these times of decompression, I am barely able to look after myself, the house goes to crap, the washing up doesn’t get done, I don’t get dressed, I avoid contact with the outside world. I’m basically on the sofa with the cats and Netflix. Which is how I dealt with the anxiety and depression and chronic period pain! So you can understand why the lines were blurred.

Lockdown positives

My diary came to a complete standstill in March this year, and on reflection it has been a very useful coincidence. 

Whilst I was looking forward to the work I had in this year (lots of Big Important Career Things) I knew it was going to be a struggle. A struggle to maintain any sense of a normal ‘life basics’ routine. A struggle to stay well.

Life basics to me are: getting up at a regular time, eating 3 nutritious meals a day, maintaining basic personal hygiene, exercising, keeping an orderly house, organising a sustainable work schedule. 

All of these things have been a struggle for me since leaving the comfort of a school and family routine when I was 18. I’ve never felt able to establish a regular routine. 

In the years since,  I’ve gone through phases of dieting, exercising, bingeing the housework, setting alarms etc but it’s never stuck. To my eternal frustration, I’d always revert to an unstable version of myself.

It felt like the life dog was walking me; I wasn’t walking the life dog. 

It’s been a constant game of needing to Do All The Things and gambling with when the next crash will happen. I knew I didn’t want to continue my life in this way and yet saw no let up in my schedule, no way to make significant changes. It’s like I was out on a stormy ocean, just bobbing around constantly trying to keep my head above water.

On the brightside

The way this year has panned out has been a blessing for me. I have never spent so much time in my own house! I thought initially I would go crazy, but completely the opposite has happened. 

I have gained sanity and stability in establishing a daily routine. I’ve finally had the chance to value looking after myself. Because of this, I’ve begun to lose weight (no mean feat, let me tell you!), I’ve cooked more meals from scratch, and started taking regular supplements to help regulate my hormones and food cravings. I’ve exercised regularly. I take regular self care breaks and have implemented ‘down time’ weeks in my diary specifically so I can sit on the sofa and veg out. Because I’ve had far fewer public appearances, I have been able to take the NT mask off and really get to know my (probably) autistic self a little better. 

I’ve been able to ask myself: 

What do I need in order to be the best version of myself? 

What do I need in order to be the best for the people in my life? 

I’ve learned to say no when my schedule is looking unmanageable, or that it’s going to have a knock on effect with my energy levels.

I’ve been able to find some useful vocabulary that helps me quickly explain where I’m at and what I need.

If this year had gone to plan, I would have been on the go most months, traveling, putting down one project to immediately pick up another. Barely any down time, no plan, no regular structure to my day. I have been there so many times before and it’s not pretty. 

When I’m overworked and overtired, the mask slips to reveal a version of myself which isn’t very nice to be around (if you want anything productive from me that is, like a rehearsal, a gig, or accounting information…).

Most people don’t get to see me on my low functioning days – it’s not pretty.

Unfortunately, it’s usually my nearest and dearest who get that version of me. When I’m snappy, aggressive, argumentative, tired and grumpy…

I boil over easily, often lashing out. I can’t regulate the tone of my voice so end up saying things I don’t mean. I struggle to organise my thoughts in order to find the right words to form sentences that make sense, or say what I want to say in the way I want it to mean. This makes me see red very quickly because I know what I want to say, I just can’t say it. I wish people could read my mind when I’m like that! I have a phrase “make these words make sense” which is a humorous way to quickly explain I’m having some overload and verbal processing issues. 

The diagnosis dilemma

Prompted by my friend Trudy’s experience of her ASD diagnosis process, in August 2019 I paid for and completed an online ASD for adults test that her therapist had given her. It was a short series of questions centering around communication, self management and relationships. It came back for me as ‘borderline/HFA with a 50% chance of an autistic spectrum disorder’. 

So far, I’ve done nothing more with this result, although it’s given me enough to confirm my suspicions. My plan at the beginning of this year was to start the diagnosis process officially with my GP. After I got the coil I was going to go back but then COVID happened and I figured the NHS had bigger problems on their plate…

Is it even worth getting a diagnosis? 

What will it actually achieve?

This is where I’m at right now. What with my collection of diagnoses that have built up nicely over the last 8 years, which ones have actually benefited me?

For me, part of the reason for gaining a diagnosis is the relief that you’re not crazy and yeah, there’s something going on that’s beyond your control. I’ve put so much hard work and money into my recovery over the years, to not feel “100% tickety boo” at the end of it comes with an amount of disappointment. 

Oh, I’m still not better. Life is still an uphill battle. So what next?

Am I just someone who likes to be ill or have something wrong with them?

The answer to that last question is definitely no – I don’t like to be a victim of my conditions. But, talking to a GP and seeking further investigation has helped to categorise what’s wrong and what can be done to help.

What can be done to help?

This is the one that gets me a little. 

I question why help wasn’t offered to me sooner for my PMS/PCOS, why I had to fork out so much for private therapy when the NHS services were so chronically over subscribed and woefully underfunded. Why wasn’t any support offered to me for my binge eating disorder? 

These aren’t huge questions in my head, because I was proactive about my recovery and in a privileged enough position to be able to afford the therapies I needed to get well. Others may not be fortunate enough.

I’m on the cusp of investigating my possible ASD and I’m thinking – what’s the point? 

No one’s going to be there with a silver platter of support for me on the other side because that wasn’t there for me before. 

Is this going to be another uphill battle? 

Probably yes. 

Am I ready for that?

Probably yes.

What’s the consequence of NOT seeking a diagnosis?

Well, I know myself better, I understand my needs better and am able to communicate that – without even needing to mention autism. They’re just my needs. But I’ll always feel like I’m in limbo if I don’t go through with it… partly I feel I owe it to those I live and work with so we can come to a greater understanding together. But doing it for the sake of others doesn’t seem the best reason to pursue a diagnosis…

Conclusions?

I haven’t quite drawn the nice, neat conclusion here that I always expect to (because nice, neat conclusions please me the most, as do most nice, neat tidy things). I don’t currently have all the answers, and I’m definitely still new at this, and that’s why this has been the trickiest blog to share.

The real telling is when the world starts to resume normality, how will I respond to the schedule filling up again? To be honest, the idea of it fills me with an overwhelming dread right now, but I know I just need to follow my instincts and keep looking after myself. I call it tweaking the machine and it’s been a crucial tool in my life skills toolkit. I’ve just added in loads more tools to it this year.

The thing about seeking diagnosis, is that it has to feel right for you. Yes you do need a support system around you, but don’t expect that just to be handed to you on a silver platter. Ask for it. Medically and socially. Friends and family have been my biggest sources of information and support during the last couple of years. 

Choose one person who’s close to you. Someone you think will be able to listen and empathise with your situation. Share your story with that person. Listen to their response – and try not to immediately brush it aside. 

A problem shared is a problem halved, as my dear old Mum always says – and she’s a smart cookie! Do you feel better for opening up to them about it? I hope so.