On world autism acceptance day I am writing this blog to share an insight on what it was like pre and post autism diagnosis for me personally, and what this day means to me.
I see a lot of parents who have to battle massively for their autistic children to get the right support and accommodations in school. The problem then becomes the battle you have as an adult with employers to get those same accommodations. Many people will not battle or advocate for themselves for fear of being fired, passed over for promotions or additional work, managed out etc.
When I was in primary school as an undiagnosed autistic child my mum used to dread picking me up. The reason being was because following close behind was nearly always a teacher waiting to have a word with her about my attitude and behaviour. I was sent for a dyslexia test and was diagnosed as having borderline dyslexia.
As a child I myself did not enjoy primary school. Imagine that in the first 10 years of your life 6 of those in the care of others and you didn’t enjoy it?
Even though I was an undiagnosed autistic child my mum defended me to the hilt. She would tell teachers I was bored and not challenged enough and teachers would tell my mum I was disruptive and couldn’t hold my pen in the right way. I was not well thought of in primary school and it had a massive impact on my confidence. As I found it very difficult to also make friends I was nervous about starting High School because I already knew at age 11 making friends for me was hard.
Despite being nervous about starting High School I was also excited as I was blessed with sporting ability, and the High School I was going to had lots of sports clubs. I was also placed in high sets which meant I would be challenged. However, making friends did prove difficult and in the first year I did not make any and was badly bullied so what I did was work really hard to get moved up into the set above me.
I didn’t properly settle in until Year 9 but I did achieve some of the top results in the school in my GCSEs and also achieved the highest set of A Level results going on to University.
I managed to get a job when I was 16 and thought because I was a high achiever in school I would do well, however I was sacked from my first job after poor performance reviews which were not based on work ethic but based on how others viewed me. I thought I had done everything right, even picking up extra shifts in a store out of town to show willingness. I had an answer for everything which, apparently is not a good thing and also because I followed the processes was seen as not gelling with colleagues. The manager also put me in for work in hours I was not available for and when I asked for them to be changed my commitment was seen as lacking and that was the final nail in my coffin and I was sacked as a result.
I remember walking to my mum's work in floods of tears and my mum went and gave them a piece of my mind. My first experience in the workplace taught me to not speak up for myself and over the next few years I was able to do better but only through being a fraction of myself. This caused me a lot of mental stress at home because after working all day in an environment where I was afraid to be myself in case I was sacked, I would then not be able to give anything and would completely crash.
After working in some truly awful environments where I was often likened to my managers 8 year old child, called scruffy and asked if I was looking for a new job and if I wasnt I should, I finally started to speak to people. What had been happening to me throughout my career was actually against several laws (without the autism diagnosis).
The final job I had prior to diagnosis and the one that led me getting a diagnosis was also the one that led me to realise, most employers are based on a school model. They cater for the majority and not the minority.
Once I was diagnosed I thought naively my employer would be able to help support me and know what to do. I was open about my diagnosis and asked for a meeting to discuss it with all 3 managers and I did not get a reply. Nothing changed for me and instead of listening to me they did their own research and put things in place that were not accommodating me but instead hampering me. They changed my hours I had been working consistently for 24 months back to the hours I started on with less than 24 hours notice. They stated the reason was because those were my contracts and I needed to be in when I could be supported. This caused me a lot of distress because I had built routines on the other hours I was working and then had to stop some activities outside of work that enabled me to socialise because reverting the hours back to the ones I had started on 5 years prior and decided to move me to a much noisier part of the office. They also advised me that I was not allowed to listen to music or have headphones. So I advised them I was quitting and did so. It was in the middle of COVID and they thought I was bluffing, called me mad, and said I wouldn’t find a job.
I was now out of employment and looking for a new job. My friends told me not to disclose any interviews as it would hamper me getting a job so I didn’t.
I was offered several jobs and took one mainly due to the environment of the office and people were still working from home due to Covid. I disclosed on acceptance of the job and again, nothing was really known about accommodations I could be offered. I had to ask for what I needed. This was what I found extremely difficult navigating because having only been diagnosed recently, I did not know myself.
Luckily, I did end up having an extremely supportive manager and other colleagues from different teams and within my team who took time to understand me and championed my advocacy. I still had to, however, advocate hard for what I needed and still do.
This is why autism acceptance day is so important. It should not have to be hard for accommodations and general support to be implemented. However, it really is. There is no cure for autism and one of the biggest turning points for me post diagnosis was I had to learn to truly accept myself. I had to come to terms with the fact I can’t do what everyone else can but there are things not everyone else can do that I can. Autism for me is a trade off. I struggle to be socially accepted however, I have my own mind and do not allow myself to be influenced by other people. I am fine with that because it means I am true to myself. I have learnt in order to create change you have to fight for it. I am fine doing that too. If I have a child I don’t want them to go through what I have. The next generation is our future and we need to make things better so that instead of 1 in 5 autistic people being employed it's 3 in 5.
I know when I have accommodations and support I excel and thrive in my environment and often outperform my peers. I know when I don’t I burn out and disengage with my role impacting my mental health and motivation.
Over this next month you will see a lot of employers raising awareness about autism. See if those same employers have jobs advertised. See what their accommodations for applying to the role is and what support they offer for difference. You won’t see many that advertise these things.
Actions speak louder than words and so far I see a lot more words than actions.