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Caz's story

Caz has kindly agreed to share her story with us. We spoke about her diagnosis, challenges, strengths, and what helps her day-to-day.


What is one thing you wish you could tell your pre-diagnosis self? You are stronger, more talented, and worth so much more than you think you are.

How would you describe yourself?


A 52 year old (proud) Mum of a lovely 27 year old son, Jim. I have a wonderful husband Paul and a talented and beautiful daughter-in-law, Eleanor (almost - her and Jim have been engaged for several years!). I enjoy gardening, feeding my garden birds (among many other types of birds I have 8 female pheasants and 2 males), walking my friend’s dog Fenn and being a servant to my cat, Lola. I love travelling, most recent trips have been to Canada and Scotland. I’m currently doing my Doctorate in Education and hoping to submit my thesis during 2024. I am a Head of Research & Analysis in the education sector. In this role I am very proud of how I have improved the structural and workforce resilience of my team over the past couple of years. I have a team of very intelligent, experienced, talented and ambitious colleagues and we are all 100% committed to embracing neurodiversity and ensuring our culture allows us all to flourish.


How did you find out you are autistic?


I was on medication and receiving counselling for Generalised Anxiety Disorder for seven years. This was triggered by my teaching career and the stresses that come with it... Increasingly I had been trying to get to the roots of my anxiety. I didn't like being labelled an "anxious person". Because, despite the medication, counselling, and making all the recommended lifestyle changes alongside that, my anxiety still wasn't going away.


Then I started working with a colleague who is autistic. I quickly realised that everything she asked for as an adjustment, everything she told me was a challenge, and everything she was putting in place to support herself completely resonated with me. Whenever she said something new I could recognise what she meant immediately and felt totally comfortable making any adjustments, they seemed very "natural" to me.


Within a few weeks of working together, coupled with my seeking a root cause for my anxiety, I started to wonder: “could I be...?” I began the journey to a diagnosis at that point and received my diagnosis about seven months ago.


 

How did you feel about your diagnosis at the time, and has that changed since?


Before going for my diagnosis, it was an odd mixture of deep down thinking to myself but not admitting to anybody “I wouldn’t be surprised if I was.” But also some imposter syndrome saying “there might be things that resonate but that doesn’t mean I am actually autistic." I had to laugh as well because in hindsight I’ve always been a professional masker. Parental expectations, being the eldest of five, and my teaching career meant that outwardly I have always felt I have to be a "certain way". Nobody would ever think I was autistic.


In the run-up to the diagnosis, I already felt relief. My biggest worry was actually how I would cope if I was told I am not autistic. But I felt in safe hands with the psychiatrist I was working with. He said that, if the diagnosis is not autism, he might be able to tell me things I had not even considered. Deep down I was expecting to be told I am autistic though because it just made so much sense.


Immediately after the diagnosis, I felt relief and euphoria. I will celebrate that anniversary every year! That feeling is still there, but I realised from about month five or six that the journey of "unmasking" my autism is quite a significant one. I didn't know when I got diagnosed what that would mean.


It is also quite exciting. Every time I can be the more authentic Caz I feel a sense of relief. I feel I've slotted into being "an autistic person" quite nicely! One of the main outward signs is how I dress. Recently I bought some sunflower dungarees - I don't care what other people think now, my main thought is "do I feel comfortable, and does it portray the real Caz?" In some ways this feels like it will be a very long-term journey, to find my authentic self, but in other ways that change has happened quite quickly.


 

Do you wish you’d been diagnosed earlier in life?


For the most part, yes, I do. Looking back over 51 years of life, every day I get lightbulb moments. “That’s why I reacted like that or behaved like that.” Then I think about the consequence of those reactions, and so often the consequence was negative. Many of those negative outcomes became internalised.


For example, now I know that I need more time to recover from social situations. Other people told me over those 51 years that this means I am lazy. I internalised that. I think back to when I was about 7 years old, I used to fake a headache to have the day at home. For a long time, I felt I was lazy or a liar or just wanting time with my mum. Now I know that was autistic fatigue and burnout.


Looking back on my career, it’s even clearer. I was an excellent teacher and senior leader but essentially ended up having a breakdown looking back on it.


On the other hand, however, all of this has shown me that I am a really strong person. If I’ve been able to achieve all that and get great results in spite of all of these challenges, that’s a positive.


On balance, so much damage was done though, and I do need to recognise that.



What is one thing you wish you could tell your pre-diagnosis self?


I would give her some reassurance. I would tell her you are stronger, more talented, and worth so much more than you think you are.


 

What do you find most difficult day-to-day, and how do you manage that?


Information overload at work


At work, I get overstimulated by the wide range of things going on in the team that I manage. It's not the individual meetings or conversations or tasks, but having to context switch and take in loads of new information feels overwhelming. Plus all of the communication that is needed alongside that.


To help myself, I'm trying to become better at knowing what to do "now" vs "later" and not pressuring myself to do everything immediately. If I'm not feeling great in the morning, I try to think "what is the one thing I need to get done today, and what would I like to do today?" I put a lunch hour into my calendar as well. Sometimes I cut it down or move it, but in that case I try to finish earlier or take a break at another time. Not because I don't enjoy the work or want to clock watch, but because I understand now that I need the rest.



Looking after my physical health


Looking after my physical self is a new thing for me. I have a busy, mentally challenging day job, but really have to think and plan simple things related to physical care. I actually walked around on a knee fracture for months and didn’t realise... In hindsight, I was almost exclaiming in pain with every step, even with painkillers, but I didn't gauge that pain in the moment.


To help myself, I spend time with animals to keep me grounded and think about my physical comfort more. For example, the textures, colours, and fabrics. This helps ensure I am as comfortable (physically and mentally) as possible. At work being able to wear things that are slightly different to the dress code is a "reasonable adjustment". For me, the less comfortable clothing is a distraction and adds difficulty in an environment where everything else is already such a challenge. I have also been managing upward e.g. advocating for myself to make sure my manager is aware of my needs. I've also been talking more to my husband and my son about this journey, which helps.



Unmasking


I still get frustrated about what I should do vs what I would like to do. For example tonight I'm going out with a friend to a presentation for a few hours. That involved a lot of careful planning and calculating, and I do get annoyed by that. Thinking why do I have to go through all of that for a simple event, something most people wouldn't have to worry about. There is still pressure to do certain things that I now understand would not be good for me... that comes with a bit of envy, because others can do it, and I physically can... but it would be bad for me.


To help myself I am trying to start to accept that this just needs managing, and digging deep about what is best for me. For example, the presentation happens to be at a convenient time and date for me. I'm going with a very close friend who makes me laugh and doesn't drain my energy. So, tonight will take some energy, but that friend will also add some energy. I am also trying not to be quite so scared of when a particular meeting or trip is going to exhaust me. Instead accepting that is the case and taking the time I need to rest before and after. I don't want to get paralysed by the fear of using my energy.


Reactions from family


I’ve had mixed reactions to my diagnosis from friends, mostly a range of curiosity levels. From family, it's been more challenging. I have one sibling who doesn’t know, one who is fascinated because it resonates, and two (the two I am closest to) who were ok receiving the information... but it’s literally never been talked about since.


I have since asked one of them face to face if she wanted anything explaining or had questions. She just said "no, there’s nothing I want to ask" and then we moved on. This feels difficult for me because I don’t know what that means! Is it positive acceptance, disbelief, or something more negative? My mind tends to go to the negative so this feels hard to manage. I would like to have that conversation with her, but so far it has not been possible.


 

What does autism help you do better?


I'm currently doing a doctorate. I think my autism gives me the persistence and determination I need to pursue it. It is a special interest for me so I just know I will be able to stick with it.


I'm excited by processes, not goals. I love being able to dive into things and make a difference that way. I spot things other people don't.


I have a very well-developed sense of empathy for other people. Sometimes that can go too far, but I'm learning to manage that.


I'm also a very truthful person. Lying is really complicated - it takes far too much energy! I'm very trustworthy, and I think that makes me a pretty uncomplicated person to get along with.

 

Do you have any special interests? What are they?


Yes! My Doctorate on the impact of education on social mobility is a big one. And overall I really relish learning new things.


Pets are another special interest. I have a cat and, for a couple of days a week, I look after my friend's dog. They help me a lot.


 

Thank you, Caz, for sharing your story with us.


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Lauren x

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