Reflecting back over the years, and knowing what I know now about autism and how it impacts me, it seems so obvious that I should have been diagnosed earlier, but like many neurodivergent people, late diagnoses are becoming increasingly common.
I can’t speak for everyone that has gone through a similar struggle throughout their life, but I can bring some clarity from my own experience. For me, I think it was a mix of lack of knowledge throughout my childhood by adults in my life, lack of knowledge in the world in general, and my high level of masking that led to my late diagnosis.
I think in some respects that I also wasn’t ready for the diagnosis until now. I’m in a much better headspace than I was in my 20s, for example, and am ready to embrace the world as my true, authentic self.
Public knowledge on neurodiversity when I was growing up
If we look back to the 90s and 00s when I was growing up, knowledge on the topic of neurodiversity in general was far behind where it is now.
I remember that dyslexia was more commonly diagnosed, along with hyperactive boys with ADHD. There were a couple of people in my year at school who had dyslexia, and had some additional support at school for it.
Autism was mainly associated with a big stigma around it. Children that were diagnosed tended to display clear, outward traits and perhaps also had a learning difficulty on top.
As children, we were scared of people with autism and they were seen as having something “wrong” with them. Of course, this is not the case, anyone with a neurodivergence just processes things in a different way to neurotypical people but we didn’t know this.
How I knew I wasn’t the same as other children
For me personally, I consistently felt out of place in the world and that I wasn’t normal. I spent long periods of time daydreaming another life and that I wasn’t meant for this one.
Over the years, I learnt how to fit in, even if I didn’t feel it inside. I learnt how to mask so that I mimicked how other children acted and internalised all of my struggles.
When I was overwhelmed, I would mainly express this in private, in my bed, by screaming into a pillow or thrashing my limbs about in frustration. Sometimes I would have an outburst, but I was just seen as naughty or grumpy.
The rest of the time, I would squash down my emotions so that I could continue to function, resulting in extremely high levels of stress and anxiety, and multiple panic attacks per day (but I wouldn’t know what these were until I was about 20).
This also led to constant fatigue and brain fog, that I just thought was normal and pushed through, resulting in a cycle of emotion suppression and feeling rubbish.
My parents’ struggles
My parents had some big struggles of their own. My mum had chronic pain and severe depression, unable to work and my dad was trying to work full-time, support my mum and do his best for me and my brother.
They both cared deeply about me but didn’t have the time to notice the signs of me struggling and weren’t aware of what to look for.
How I was perceived at school
At school, if I had any outbursts or different behaviour to other children, this was seen as misbehaving and treated as such. My grades were good and I was not able to express how I was feeling. I didn’t know how to do this.
Mental health support
Throughout my teenage years and early 20s, I sought professional help from my GP for depression, anxiety and childhood struggles.
As a teenager, I didn’t receive any support but did get counselling and CBT as an early adult, as well as trying different medications. I didn’t see much improvement from this and this led me on a more holistic journey through meditation and other means.
I think throughout this time, some of the signs could have been spotted and perhaps I would have had an earlier diagnosis if I were asked the right questions by professionals.
I didn’t know the right things to say because I had no knowledge about autism at this point. How could I have received a diagnosis if I didn’t communicate what the doctors would need to hear?
The pressure of university
I did two years of university studying German and Business & Management, but quit before my third year because I was so anxious about having to travel abroad for my third year.
On top of this, I massively struggled to adapt to life at university. I found attending lectures very intense and ended up skipping quite a lot to just teach myself from books on my own.
There was a lot of change, pressure and expectations that I couldn’t cope with. I missed some of my exams in second year because I was so overwhelmed, depressed and anxious. The staff were helpful by giving me an average grade but didn’t stop to ask the question of what might be the underlying cause.
Again, there was less knowledge about neurodivergence in general and I don’t think it was something that might have crossed their minds.
Physical health support
I’ve also struggled with extreme fatigue and chronic pain throughout my life and this came to a head in my late 20s when I was so severely fatigued that I had to quit my job with long hours (I was working on average between 60 and 70 hour weeks) to a part-time, remote working position.
I was diagnosed with ME/CFS and fibromyalgia. Throughout the remaining time in my 20s and into my early 30s, trying to manage this was my top priority.
I am constantly masking and planning things out at work through things like
- maintaining eye contact
- changing how I speak to suit the situation
- keeping still (I often sit on my hands until they went white or clench them into fists and keep my whole body rigid)
- maintaining control over facial expressions
- planning all conversations ahead of time and writing down cues for myself so that I am prepared ahead of time
- Planning all my time out religiously so that I am prepared for the days and weeks ahead.
All of the above take their toll on my overall wellbeing. I still do much of this to this day but am actively trying to unmask myself more.
Learning that autism can show differently in women and girls
I first learnt that autism could be perceived differently in women from following Ellie Middleton on LinkedIn. I was doing some research into neurodiversity at work and somehow came across her profile. At that point, Ellie had recently received her diagnosis of both autism and ADHD. This was game changing for me and I’m so grateful to have stumbled across Ellie’s profile!
I then did my own research through numerous Google and Reddit searches and the pieces fell into place for me. Having the ongoing mental health struggles coupled with the extreme fatigue, really did make sense.
Because of women and girls masking their autistic traits more, the diagnosis can be harder to obtain.
- Women can can seem to appear to cope better with social situations, when actually they are just struggling internally
- Men tend to have more specific focused interests, whereas women might have a more diverse set of interests
- Women can show less repetitive behaviours than men, but this doesn’t mean we don’t have them!
My final thoughts & excitement for the future
It’s unfortunate that the signs were missed throughout my life before this, but I’m so grateful for the opportunity to be able to start afresh and make some changes to live my life in the best possible way. I love life and want to live it to the max.
I’m still peeling those layers back to my authentic self but feel like I’m well on my way now and very excited for the future. For me, there wasn’t one time that the signs were missed or one reason why that happened, but a number of different factors that added together. Life is a journey and I’m happy to be on it.
I do have days when I am very frustrated that I had the diagnosis so late and I definitely felt more frustrated right after the diagnosis. I’m trying not to dwell in the past because it can’t be changed but I can change how I live in the present and the future.
Does this resonate with you? Please do share your experience. I would love to hear from you.
Much love, Rachael xx
Each layer I peel takes time and energy. If you’d like to help keep the onion blooming, please donate through this link.
Some useful links and further reading
- Ellie Middleton’s podcast– sharing her insights on Autism & ADHD
- Autistic Women and Girls, National Autistic Society– loads of useful info and suggested reading around how women and girls can be misdiagnosed
- Women and Autism, Neurodivergent Insights– interesting infographic and loads of others on the website too about autism in general
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