I have recently been accessing support from the wonderful FrontLine19 (*I'll put their information at the bottom). In one session in particular we got on to the topic of expectations.
We got into a long conversation about the use of labels, I have previously written a post about labelling, in particular the positives and negatives of a diagnosis but I wanted to expand on this post. Just for a bit of context of the conversation I had:
We were discussing on shift at work last winter. A winter where in paediatrics we were hit hard with COVID. A winter where I was a few months into my new post as a NQN. A winter where staff shortages were at a peak with people off isolating.
I talked about one shift in particular when I was nursing the COVID + end of the ward. Feelings of isolation, doubt where high. I talked about feeling frustrated with myself, the lack of support that the system gave me and an overwhelming sense of responsibility of caring for a number of children who were unwell with COVID.
When asked why I was frustrated with myself my answer was well I didn't feel I was capable but I had to prove I was. These thoughts were challenged with 'well even if you didn't feel capable the management making the decision must have felt you were, you weren't the only nurse in the hospital who could nurse COVID patients'.
This led me to acknowledging that I have very high expectations of myself, so added to a stressful situation of caring for sick children in full PPE (Not pleasant) and being isolated from the rest of the ward (my support network as a NQN) I had this added pressure on myself to prove a point, I could do it.
When asked where I feel my high expectations of my self is rooted I was initially clueless, I had grown up in a supportive home where we were encouraged to do our best not the best. With a bit more digging we got there, initially it surprised me but now it makes perfect sense.
And this is what I wanted to share in this blog post. I want to talk about how societies negative views of people with a diagnosis of autism can massively impact them.
As I have shared in previous blogs my school experience was hard, I met a lot of barriers and had a lot of 'you can't do this' sort of attitudes. For example...
- The school I attended from year 7-11 had a leadership team that were very results driven. Anyone with additional needs was a right off, this included me. At the end of year 9 I was on a pathway that was very much geared towards practical qualifications rather than GCSE's. I am so grateful for my parents and the school SENCo who really pushed for me to be able to access the same curriculum as my peers and as a result I achieved GCSEs (and A-Levels!)
- The classroom environment was challenging for me (loud, pressure of socialise etc) which impacted my ability to learn, this often meant I was placed in bottom sets where behaviour was often poor. It wasn't until GCSEs that I was moved up to top sets (an environment where people were more motivated to learn, generally more mature students). Some lessons I would be given the resources and work though it myself in the student support base, this unlocked my ability to achieve academically but for years I lived with the reinforcement that I wasn't very clever and almost had a second class education being babysat with the 'naughty kids'.
-I wanted to partake in the Duke of Edinburgh award, there were a lot of people that doubted my ability but again my parents were my cheerleaders. Rather than the 'she hasn't got the independence view' they took the view of this is an opportunity to build independence skills.
- When looking at universities me and my mum attended an open day at one particular university. For me the student support was one of the most important things to get right so this was the first place I started. Me and Mum went up to the student support stand and I explained I had a diagnosis of autism and asked what support my look like for this. The answer I received was well you'll never be able to be a nurse with autism so your best looking a different courses. Safe to say we left the open day straight away and took them off the list!
- when I started my first job as a NQN I was faced with challenges with the occupational health (OH) process.. I was hoping to start my job at the start of September and at the end of august was told that I would need to be seen by an OH consultant to discuss my disclosure of autism. Due to a delay in appointments this meant my start would have been delayed by weeks. At this point I felt really cross with my autism as it was holding me back from being able to start work. Thankfully with a few conversations this was sorted and didn't impact my start!
As I talked though each of these examples I realised that while each one is small they all add up and have impacted my self esteem. They have created this sense of I cant do it and I'm not good enough.
Over the past 10 years I have been on a real journey in understanding and accepting my diagnosis. I have in the past few years started to come to terms with the idea that autism isn't all doom and gloom but when looking though the above influences it is no wonder that so many young people struggle to see a positive of their diagnosis.
It has been really helpful for me to be able to start to understand why I am so harsh on myself, it comes from a place of wanting to prove people wrong. I am proud of my resilience over the years but having unpicked this a bit more I am keen to work on having more realistic expectations of myself.
Having reflected on this it has made me realise how important language is. The labels that we use and hear from such a young age impact us as humans.
I love the saying instead of I cant do it I cant do it yet, what would the world look like if we had this approach to those with a disability.
Rather than out right 'you can't do it' what are the barriers and how do we break this down. We don't say those with a physical disability can't go upstairs and settle with that we have lifts.
What lifts do autistic people need in life? One simple lift is praising and focusing on the can dos.
At the end of my really helpful discussion with the Frontline 19 councillor I had come to the realisation that the feelings of I can't do it were deep rooted in the influences of negative labels from growing up and proving a point of I am capable and a decent human being.
While I wouldn't go back to my school years however much you paid me I also don't want them wiped from my memory. They have shaped me to be me. However the trauma that school involved surly doesn't need to continue to be the case for young people today.
If you take one thing away from this blog let it be the importance of language!
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*FrontLine19 is a FREE independent, confidential and UK based nationwide service delivering psychological support to people working on the front line (including emergency response teams, ambulance support staff, social care and care home workers, teaching staff, agency and patient-facing NHS roles)
For more information click on image below:
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