Understanding Our Needs: Autism and Self-Care

Transcript (please note there is tiny bit of artistic license in my audio version). Here's the link to my free soothing sensory self care kit: https://www.buymeacoffee.com/melwakeman/e/181984 Hi, I'm Mel Wakeman, your fidgety AuADHD registered nutritionist who is challenging neurotypical dietary advice because it just doesn't work for neurodivergent folk. And welcome to my first audio blog... Understanding Our Needs: Autism and Self-Care Self-care is a fundamental aspect of our well-being. With a universal lens, it encompasses doing (and not doing) things that promote mental, emotional, and physical well-being. It makes sense that self care will look different for everyone on the basis that we are all different, but differences, especially neurological ones, are not always considered or respected are they? As a late diagnosed autistic, I had not realised the extent of these self care differences (for me), or appreciated how difficult it could be to implement a practice that met my needs. I now see how my allistic perceptions of self care were deeply ingrained and I’m still working out what my needs actually are. So come with me as I share how self-care for autistic folk must be individualised; giving insights into our sensory sensitivities, routines, social interactions, special interests and communication differences that mean different approaches are often needed. Sensory Processing Differences Sensory differences are very common in autistic adults. They are often complex, individual and interconnected. This can look like hyper-sensitivity to sound, smells, light, tastes, touch, but also more ‘internal’ senses like balance, proprioception (your body's ability to sense movement, action, and location) and interoception (feeling what’s going on inside of your body). I say ‘look’ but want to emphasise that it’s not always obvious. I learnt to mask from an early age, which meant I managed to internalise much of the distress I experienced. Until I couldn’t. Which meant throwing and breaking things, or hurting myself. Also, it’s not uncommon to experience hypo-sensitivity too. I see this as a protective response, causing a shutdown when everything feels too much, as well as a neurological difference that ‘just is’. My sensory system still appears to behave randomly but I’m still working a lot of stuff out. Menopause has certainly ramped things up and I’m trying to be openly curious in my observations, learning what feels tolerable, or not. Take my nose and skin. In stinky fart situations (I’m talking dogs and babies, not me) my hyposensitivity has been a godsend. But then there’s ‘wrong’ smells that trigger a scent-sickness - headache, nausea, increased anxiety and I get super twitchy and don’t like things touching me. Other times, I need pressure against me, so I wear snug clothing and use a heated heavy blanket to self regulate. My ears hurt when it’s cold. They ring when I’m anxious and I’m not entirely sure what silence sounds like. And I’m sensitive to complex noises. It’s why I don’t like to venture into busy or echoey coffee shops when my nervous system is already activated. Complex noises feel to me like repeatedly scraping your fingers down a blackboard. Not exactly conducive to enjoying a nice cup of tea and cake. When it comes to food and eating, sensory differences can mean eating experiences can range from disappointing and pointless to impossible. Our reactions are not ‘a choice’, rudeness or attention seeking. Notice I’m not using the words ‘over-sensitive’ or ‘under-sensitive’ as these imply there is a ‘normal’ or expected level to be achieved. There isn’t. This is about acknowledging differences not deficits or excesses, and destigmatising these differences - something I’m going to delve into more deeply around food and eating in the coming month. Developing a self-care practice that caters to and supports our sensory differences (particularly to help manage sensory overload) can make the difference between participating or not participating in life. What I mean by this is that sensory overload can result in meltdown or shutdown. It can be incredibly isolating. No socialisation, no work, no food, no fun. Nothing, due to zero capacity for sensory stimulation. In times like this, having a soothing sensory self care kit can help you to feel more grounded and calm in challenging or unfamiliar environments. I like to have access to tactile stim toys (I have a penchant for squishy balls), noise-reducing ear plugs, sunglasses, lip balm and hand moisturiser. I’m currently on the lookout for a game I had as a kid - it was a portable water based hoopla. There were buttons on the front you pressed to push little coloured rings up inside….and as they somersaulted around, you’d try to get them to land on a little pole…do you remember those? It’s taken me a while to realise how therapeutic water I can see and hear, without getting undressed, wet or cold is. Routine and Predictability My autistic brain loves to know what’s happening. Structure and routine help to reduce my anxiety massively; something my ADHD brain is less keen on, but I definitely get a sense of security and that everything is going to be OK if I know what’s involved in anything I do. I know this can drive others mad; I often have many questions and I can overthink a lot! But telling others about my need to know has also helped. The downside to this is slipping into overly rigid patterns. I’m trying to see the conflict my ADHD and autistic brains can have as helpful. It's important that our routines can be flexible in order to accommodate the changes and challenges that life usually brings. Routine and structure around food helps many autistic folk, but it can also become problematic when rules become too rigid - something I’ll also be talking about soon. So self care here is about finding your anchors that can be nudged when needed; set doable routines that offer comfortable bendiness to minimise the chances for unexpected distress. In a world that is highly unpredictable. For me this is putting things in place to help me eat at regular intervals. It’s also working according to my fuel tank, rather than based on the jobs to be done and guilt felt. Social Interaction and Isolation Social interaction can be tricky for many autistic folk. Having been called ‘anti-social’ and ‘boring’ and for all too long, it was time to stop putting others' expectations before my own needs. After decades of masking, showing my vulnerability by speaking my truth has been uncomfortable to say the least. But I’m dead set on finding an aligned self care practice here. I’m not sure if it’s a midlife thing, but there’s been a ‘I’m not taking any more shit’ standpoint that has proved a helpful driver. But setting and respecting my personal boundaries has at times created resistance and many more questions I haven’t always had the energy or courage to deal with. But….giving myself a voice (albeit slowly) about where my energy goes (knowing who sucks it up or makes it grow) has been a great thing to do. In other words, find comfortable ways to communicate, keep in touch, and socialise with friends and family that work for you. We deserve dignity, autonomy and respect. We have a right to find our own balance of alone time and social time, to choose where we feel safe, or at least recover and recharge in peace. Special Interests and Hobbies Blessed be our special interests. These are my therapy - alongside my lifetime career of food work and nutrition that I love, I'm currently into interior decoration and playing with paint colours and designs (I’ll share some pics soon). Special interests are more than just hobbies and thanks to my ADHD, I have experienced many. Yes they bring enjoyment but it’s more than that and it’s absolutely self care. Even when other people don’t ‘get it’. They help us cope with our emotions and for me, they have raised my confidence and self-esteem massively. The repetitive nature of painting a wall or crocheting a cushion is literally finding calm in my hands. I’m seeing the wobbly grey line between special interests (spins) and obsession. Honestly, I don’t know if I also have OCD, but I am giving myself permission to explore and to look at them positively. Communication differences It’s clear to me now that allistics communicate in a totally different way compared to how autistic folks do. I’ve read time and time again how autistics (and neurodivergent folk generally) often communicate well between themselves and when I got my diagnosis, a lightbulb came on. Now it’s more no shit, Sherlock. Small talk is unnecessary - just get to the point already. It’s the same with stating the obvious - why? Facial expressions can pay no resemblance to what’s really happening: not smiling doesn't mean I’m miserable or that I need to try harder. We will share our opinions. We are honest. Sometimes brutally so. Partial information is not good enough. Embracing my communication differences has been a big part of my self care work. These differences have also meant I’ve become very selective with who I surround myself with. And in part, why I’ve been off social media. And if I’m being honest here, my absence has been mostly because I’ve been processing and working this whole self care piece out. Self advocacy has been hard. But also 100% worth it. A note on Advocacy Self-care includes learning how to express our needs and boundaries clearly, so we have access to a supportive and understanding environment. Building a network of friends, family, and allies who appreciate our communication differences is vital if we are to create (and thrive in) a more inclusive and accepting society. When it comes to accessing health’care’ self advocacy can be one of those frustratingly difficult and relentless things to do. And no, it shouldn’t be this way. The lack of education, ignorance and unwillingness to cater and accommodate our needs is appalling but the thing that keeps me going is the hope our next generations don’t have to do the same. When our differences in sensory processing, routines, social interactions, special interests and communication are recognised, everyone wins. But most importantly, autistic folk will be better supported on their self-care journey. Self care is often a hard practice, regardless of neurodiversity, so let's not make it any harder than it needs to be. Annnd, I have just the thing to help develop your self care practice to help you around your eating experiences - I’ve created a free how to guide that shows you how to build your very own soothing sensory self care kit. There is nothing wrong with using food to soothe and self regulate by the way. Food can be an amazing coping strategy as it provides stimulation, distraction, connection, comfort, supports embodiment and helps reduce cortisol release. But if food is our only coping strategy, or food simply doesn’t hit the right spots (for all sorts of reasons), we need to widen our self care approach. Sensory soothing can help before, during and after eating and can be stimulatory or help with sensory avoidance. Download it for free from my Extras Page, here on Buy me a Coffee: https://www.buymeacoffee.com/melwakeman/e/181984 If you struggle with food anxiety and eating differences (food sensory sensitivities, decision paralysis or worry your diet is too limited due to rigid food rules or preferences) I can help. Book a free 30 minute consultation and let’s chat. I offer a safe space, free of assumptions and judgement to help you find understanding and a way forward.