A Day In The Life Of An Autistic Woman

image title reads autism a day in the life of an autistic woman the image to the right shows a sculpture of a human head with rings around representing thoughts.

Initially this post was about the pandemic and how having autism has impacted on my experiences throughout the pandemic but as I began writing I realised that I can't really detail how the pandemic has affected me if you don't already know how my autism effects me. I've written a bit about how I got my autism diagnosis, shared my experiences growing up undiagnosed in a mainstream school and I've talked about how autism impacts on dating and holidays but I've never really shared how it impacts me on a daily basis. I've never shared an 'ordinary' day with autism. So here it is, the thoughts, feelings and emotions of an autistic mother on a 'normal' day. 

The day begins with a spike of adrenaline. I don't wake peacefully, I wake with a bang. From the moment I regain consciousness from my very deep sleep my brain is whirring with plans. My mind instantly starts to make structure and routine in order to get done what I need to achieve. 

Breakfast is the exact same thing, every single day. I am incapable of eating 'what I fancy' as that's a concept that doesn't exist for me. Breakfast is a planned and controlled meal. There are certain bowls suitable only for breakfast, certain spoons for eating it and specific cups for tea. I am very particular when it comes to mugs. They are categorised into tea, coffee, hot chocolate. There is no deviation from these categories. I know that this is down to my need for order, I understand that my partner and child don't have these categories and I respect that they eat what they want from whatever crockery they want but it doesn't stop me feeling anxious when Dan makes tea in a non- tea cup. On the occasions he's made me breakfast in bed I've had to go and re-do it because it wasn't 'right'. An inappropriate cup, too much yogurt, the wrong bowl. It makes me sound ungrateful and high maintenance but it's not something I can change, no matter how much therapy I've had. This is life and love with autism. 

Next comes getting ready for the day. I am very strict with clothing, again it is heavily categorised. Like many people with autism I suffer with sensory issues. Textures, fabrics and fit impact hugely on me. I am only really comfortable in jersey clothing i.e pyjamas, jogging bottoms, large, loose hoodies etc. I find these the only clothes that don't cause me uncomfortable sensory symptoms but when I've dressed like this in the past I've been humiliated, bullied, mistaken for a man and embarrassed so now these clothes are my 'indoor' clothes. My outdoor clothes are things that are more 'socially appropriate'. The basic formula is jeans and a top. 

On a bad day, I want to wear my 'indoor' clothes to satisfy my sensory needs but I can't because 'the rules' dictate that I wear 'outdoor clothes'. I literally cannot get dressed. I try on everything I own, I scream, I cry and I just cannot do it. The logical answer is to wear my 'indoor' clothes but I can't break the rules I've made about 'outdoor' clothes. Two massively autistic traits battle against each other. Sensory versus rules and on a bad day none of them win. I just stay paralysed, angry, sad and frustrated. 

If I've gotten to the point of being dressed in 'outdoor' clothing then it's because I've got to go outside. If I don't need to go out then I won't get dressed but now I'm a parent there is usually somewhere I need to be. Leaving my house is never easy. I go the same route to preschool, 3 times a week. Surely that's easy- it's the same journey every time and I love routine- but is it really exactly the same every single time? No, it's not. Each time is different. Sometimes there are road works on the street. A neurotypical person will instinctively know to move around the barriers and walk in the designated area. I don't have this instinct and it takes my brain too long to solve the problem of 'where do I walk?'. Then I panic because I don't know what to do, I feel fear and anxiety because I can't get my usual way down the street. This is why I don't go anywhere unaccompanied, it's too stressful for me. I need to be with someone who can think for me, someone I trust and who I can imitate and follow to get me past the road works. The same thing happens when I'm faced with any unpredictable event. Window cleaners, post men, other people walking past, a car parked where I usually cross the road. Normal everyday encounters are hugely distressing for me, not that you can tell because I've become a pro at masking (something I will discuss in a future blog post).

After dropping Iris at preschool and returning home I begin my daily routine....and it is very much a routine. I have a weekly cleaning rota that I do my best to adhere to. If things have been calm and predictable then I can carry on with relative ease, cleaning the same rooms,  in the same way, with the same products each time but life is very rarely predictable.  Something as simple as a parcel being delivered is enough to upset me. Even if I know the parcel is arriving the anxiety of having to have a conversation can overwhelm me. Conversation does not come naturally to me. If someone says 'hello, nice weather we're having' my brain has to process each aspect of that sentence and find the appropriate response. It feels like I have a big reference book in my head and my brain is flipping through it to find an answer and because I don't instinctively know the answer I start to panic. It's mere seconds to an outsider but to me that lull between being spoken to and me finding the answer is enough to completely drain me of any energy I had. What is really frustrating is that I don't keep hold of an answer when I find it. I could be asked the same thing fifty times in a row and still have to flip through the big book in my head to find the appropriate response so the anxiety never lessens. When you factor in how many times that can happen in a day then it's easy to see why I'm so tired! The post man saying 'hi', the school mums chatting about the weather, a person asking for directions. Any chance of social interaction puts me in a constant state of  panic. 

Once I've been to collect Iris from pre-school around 3pm I am usually absolutely exhausted but now it's time to cook tea. Like all the other meals we consume they are planned out well in advance. There is no head space for 'what do you fancy?' type cooking. It has to be a one pot dish such as stir fry as I cannot concentrate on more than one thing at a time. When I do try to do two things at once I become a danger to myself as I am likely to burn myself or leave something switched on. I can only cook when someone is available to entertain Iris so when my partner is working, Iris and I eat at my mum's. I find it impossible to safely cook and parent at the same time. Mum also does all my ironing as I can't tell the difference between clothes that are wet and clothes that are cold and I can't iron as I get very frustrated that I can't get every single crease out and being around a hot iron when you have a tendency to throw things in frustration can be very dangerous for me. I can't seem to grasp that something can be ironed but not completely crease free. I think this is a combination of all or nothing thinking and perfectionism.

Bath and bedtime is my favourite part of the day. I'm in my home, it's too late for deliveries and I've got my 'indoor' clothes on-which I change into the moment I get home. Iris and I get comfy and read together, it's probably the only time in my day where I get to be at peace. The only time I'm in the moment and my brain isn't scrabbling to make sense of something. 

My own bedtime is a little less peaceful. I try to read to unwind but that often depends on the day I've had. Sometimes I am so incredibly tired that I instantly fall into a very deep sleep which very little can wake me from, it's become a bit of a joke now but in the early days of being a mother I was devastated that I didn't wake instantly when Iris cried but now I realise that sleep is the only rest I get and I need to completely shut down to re-cooperate ready to go through all the anxiety and panic again the next day. There are other nights when I am very emotional and tearful and I reflect on the conversations I've had throughout the day and whether I got the right response in the right time frame. It's hard to stop myself thinking about the pressures of the following day's activities. I try to imagine scenarios that may happen and try to anticipate my response. This is of course a pointless exercise, I can't predict what the following day will bring but I keep searching for predictability regardless.

It's tough and it's tiring being a person with autism and it's very hard not to fall into the trap of blaming myself even more so because there's no definitive answer to the question 'what causes autism?' and it's not even agreed upon whether it's a mental illness, a learning disability or a developmental disorder- I've heard it referred to as all of these and more. For me I choose to view it as a neurological condition, literally that 'my wires are crossed' and that's why I need structure, routine and predictability to compensate for not having those innate abilities to process information and respond accordingly. I use routine in place of instinct-How do I know when my hair is clean? When I've rinsed it 10 times. Most people 'just know' when somethings done, I give myself instructions. 

There are many more aspects of autism that effect my daily life, the way I don't understand unwritten societal rules, the way I struggle to process mine and other people's emotions, the way autism effects my role as a parent and there are also the ways in which having autism enriches my life. I'll hopefully reflect on these in time but for now this is just a small window into my life with autism. 

 Thanks For Reading 

Katrina Fox UK based parenting blogger. Writing about Coeliac / celiac disease, Aspergers Syndrome and Autism, Pregnancy, Parenting and both Childrens and Adults Books

12 comments:

  1. Really interesting post and insight. However, I don't think the ironing thing is to do with Autism. Does my head in...#KCACOLS

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    1. Weirdly my mum really loves ironing so I don't feel too bad that she does mine x

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  2. Thank you for sharing some of your daily challenges living with autism. Your words are super insightful and helpful for a lot of people xx #KCACOLS

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    1. All I've ever wanted to do is help people. There was so little help and support when I was first diagnosed. If my words help just one person then it's been worth it x

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  3. This article really made me stop and think about what your day is like. I wish it be easier for you. The times I wake with a jolt are always startling. And then you have the rest of the day...

    Very well written post. :)

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    1. It is very tiring and there are times I wish it was easier but it's all I've ever known. I would love to be able to experience a day through the eyes of someone that isn't autistic x

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  4. Interesting and insightful post. Thank you! #KCACOLS

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  5. I really love your blog Katrina! I love how you share so openly and articulately about what being autistic is like for you - it's such an amazing insight, thank you :) #KCACOLS

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    1. Thank you so much Hannah, it means a lot to me that people find this helpful. There are so few resources that come directly from autistic people- I find most information is from 'professionals' and that isn't always helpful. I know when I was first diagnosed I was looking for information I could relate too, from a person who is 'like me'. I've found sharing my experiences with other people with autism has helped me to accept myself. If posts like these help someone then the journey has been worth it x

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  6. Thank you so much for sharing this very personal story. I didn't realise at all what it was like, but it makes a lot of sense when you spell it out like this. I really enjoyed reading this! #KCACOLS

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  7. thank you for sharing this. Important reminder that none of us know what others are dealing with daily #KCACOLS

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Thank you for supporting me on my journey to raise awareness about mothers on the autistic spectrum. We do exist, we just need people to know we do!

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