a masterlist of things that have *actually* helped me as an autistic person
36 things that have changed how I live my life as an unapologetic autistic person
Learning you are an autistic person is hard work. There is a huge amount to process - about yourself, who you never knew you were, how it impacts your life and how you interact with society. But there’s also huge amounts of misinformation out there, and a lot of people and places that just want you to spend money with them on things that won’t actually help you.
I’m not saying I’m some sort of guru with all the answers - but I have spent nine years trying to find things that help me, and have unfortunately spent lots of money on things that haven’t helped at all. I thought I’d put together a list of the things that have actually helped me, and you can take what might help, and leave the rest.
Some of these things are physical items, some are things to learn about or shift perspective on, and some are things to change about how you interact with yourself and the world. There is no pressure for you to agree with any of this, agree with how I live my life, or to take on any of these things if you don’t want to. They are simply things that work for me.
I have intentionally avoided most things that are centered in bureaucracy here, like things which require a formal diagnosis, as this isn’t accessible to all. These are mostly things you can do without a diagnosis.
Note: I have low-medium support needs (some intertwining with my physical conditions), and I am lucky enough to have family who provide quite a lot of the support I need, so this all comes from that perspective. I don’t pretend to completely understand the experience of high support needs autistics.
Learning about bottom-up thinking. This refers to a style of thinking often found in autistic people, where we take in all the details first to build a bigger picture, rather than the top-down style often found in allistics where they see the whole picture then take in details1. This might be in a discussion of two sides, or at work, but for me, this is also very important to understanding some of how my sensory system works - it explains why I get so easily overwhelmed in places such as train stations, where I’m taking in so many details at once.
Understanding my co-occurring physical health conditions. Physical health conditions are extremely common in autistic people - particularly, we know hypermobility (including Hypermobility Spectrum Disorder and Hypermobile Ehlers-Danlos Syndrome) and dysautonomia are especially common compared to the general population2 amongst other things. Understanding the extent of my needs surrounding my HSD/hEDS and Postural Orthostatic Tachycardia Syndrome (POTS) and how my autism impacts these has been core to supporting both my body and my mind better. If you want to learn more, you can read my book on the topic.
Having conversations with my family about small changes they can make for me. For me this has included: telling me before putting on anything noisy like a vacuum, not expecting me to eat with them, letting me know about changes to routine, and not touching me if I am in a panic attack or meltdown.
Understanding my sensory profile & understanding my sensory needs in detail (particularly interoception). I was lucky enough to have a sensory profile done as part of my dyspraxia support when I was 17. Understanding the differences between sensory seeking & sensory avoiding, hypersensitivity and hyposensitivity, and what that means for me really began to change how I live in the world. Our internal senses (interoception, proprioception & vestibular) are rarely talked about in society but for many autistic people are extremely significant to how we feel in our bodies and issues such as dehydration. I want to write more on this soon, but I will link some good resources in the notes too.3
Buying multiples of my favourite pieces of sensory-friendly clothing. My wardrobe is 90% dungarees, tshirts, jumpsuits and fleeces in various patterns and colours, but in exactly the same styles.
Applying for everything I possibly can. In the UK for me, this has been benefits such as Personal Independence Payment; government schemes for work and education like Disabled Student’s Allowance and Access to Work; bus passes and railcards; and schemes such as the CEA cinema card. Some of these require you to have a diagnosis or currently be on benefits, others don’t.
Spending a lot of time body doubling and co-regulating. I often cannot do something without having it modelled to me or being amongst others doing the same thing. This can be body doubling through coworking sessions (I do Writing Club and Coworking Club with the legends at Internet People) or just through working alongside another person, or co-regulating through parallel play, where you are next to someone without speaking, doing something like playing video games or reading for example which supports me to regulate myself.
Using alternative forms of communication. I am a speaking autistic person, but I have verbal shutdowns often, and as I unmask I find it harder to speak. I use forms of Alternative and Augmentative Communication like communication cards (I have used Stickman Communications since 2015), the app “Big”, and writing. Others may need AAC like communication boards, Voice Output Communication Aids, or sign language4.
Doing things differently when I need to, and learning that’s okay. Sometimes I just don’t work the ways others do, and it’s taken me a long time to see that as okay. I don’t try and force myself to do something if I can’t in that moment. I do things that others might find embarrassing, like holding a cuddly toy during my audiobook recording. Letting go of expectation and shame is not simple, but I do think it is core to a better life as an autistic person.
Engaging with self-advocacy, and advocacy from others when needed. Learning and becoming able to advocate for myself has been a long process and I can’t always do it - I have to have others support me with this sometimes. I’ve had to learn the things I will always struggle with during advocacy for myself in healthcare, education, or employment, like not being able to differentiate between types of pain, and then work out how to advocate about it (and what kinds of support I might need to do it).
Weighted blankets and tight hugs. I am a deep pressure autistic, and these things are often first port of call when I am overwhelmed, anxious, or post-meltdown.
Rewatching TV shows and films, and listening to the same song over and over again. This supports my need for predictability & sameness, and leans into my pattern recognition and often lets me engage with my special interests. The latter is often a specific sensory input need, also.
Having an app that helps me to automate my savings. I am extremely bad at budgeting and understanding money. I use Plum to help automate this process and put money away into different pots for different needs, so I don’t have to be so consciously aware of saving for my tax bill or big upcoming expenses.
Tracking my menstrual cycle and learning more about it. Still getting to grips with this one, but aspects of my autism are definitely heavily intertwined with my hormones and where I am in my cycle, including emotional regulation and my tolerance for sensory input. I personally use Clue, which is very gender neutral (who are bound to GDPR laws, unlike other period apps, so does not sell your data).
Using earplugs, ear defenders and noise-cancelling headphones and learning not to be ashamed of it. I am pretty much surgically attached to some form of ear protection at all times, and my life is immeasurably better for embracing it. I even bedazzled a pair of ear defenders for the Eras Tour last year! Just because you could cope with the noise doesn’t mean you should.
Using visual timers. There is something about being able to see time passing that helps me to understand it, and helps me to focus too. I imagine this one is more ADHD-related due to time agnosia, but I do see it as part of my autistic thinking, too.
Having a neurodivergent therapist. This is a privilege, but something that has made my life immeasurably better. He understands what I’m saying more easily, he relates, he can cope with my meandering thoughts (and often goes off topic himself). He knows about the ways my body and brain are different and need to be handled differently.
Not reading self-help books by neurotypical authors. I talked about this in a recent post, because it completely changed the way I was shaming myself and forcing myself to try and become more neurotypical in ways I will never be.
Not seeing my needs as “childish” or attaching independence only to my age. Still working on not falling back into this sometimes because I internalised it so deeply, but I know comparing myself to my peers, the independence they have and what they can do is not good for me. I am not behind, I just have a completely different wiring.
Stim toys as an average part of my existence. I am pretty surgically attached to Tangle Creations (so much so I got it tattooed on me), but I have other stim toys I like too - recently I’m enjoying Needoh. Experimenting with stim toys and then learning to not be ashamed of using them took me a long time, but now I largely just see them as a part of me and how they allow me to participate in my life. They’ve been with me everywhere, from my A Levels to speaking in the House of Lords. I normally buy from Ali’s Sensory Boxes, a small business.
Finding work that works for me. This has certainly been a privilege, but being able to be a freelancer/part-time worker and largely dictate my own schedule has been key for me - I start work later, I mostly am interested in my work, and I have been able to leave spaces that have been detrimental to me.
Understanding my eating as not “picky” or “wrong”, and knowing fed is best. Like many autistic people, I have a really limited diet due to struggling with taste, texture, and smell. It may not be ideal, but it also isn’t just picky eating and it isn’t something I can change very much. You may need to take supplements or speak to a doctor or dietician to make sure you are okay, but there is nothing wrong with you for it.
Allowing for predictability & sameness wherever I can, so I can be flexible elsewhere. My friend Ellie Middleton talks about this in her book How To Be You and I like it as a guiding principle when it comes to my autistic life. Having aspects of my life being very consistent and predictable - like my morning and evening routines, meals, or volunteering - means I am somewhat more able to process and cope with changes in other areas if I have to.
Reading about and understanding neurodivergent-affirming approaches and the neurodiversity paradigm. The neurodiversity paradigm was coined by Nick Walker5 and is fundamental to understanding ideas around not seeing neurodivergence as something wrong or broken in us, and moving from medicalised notions of autism (note: this is not the same as saying autism isn’t a disability). I got my autism diagnosis in a psychiatric ward, so I medicalised myself heavily and immediately. Shifting my perspective and learning how to accommodate myself through affirming my needs as a person who diverges from neuronormativity has been key. As well as Neuroqueer Heresies, I recommend We’re All Neurodiverse as a starter guide to these concepts.
Not drinking alcohol. This one won’t be for everyone, but alcohol significantly affected my anxiety, sensory overwhelm and ability to process the world for several days at a time. It wasn’t worth it for me.
Using a sunrise alarm clock to wake up in the mornings. I got a Lumie clock a few years ago and I completely underestimated how much it would change my life. I don’t wake up overstimulated from a noisy alarm, I wake up over a period of up to half an hour by the light. This has also had a big impact on my chronic fatigue as my adrenaline is lower in the mornings, and my waking is at the right time in my sleep cycle instead of at an exact minute.
Finding neurodivergent friends (but also knowing I won’t get on with every neurodivergent person just because they’re neurodivergent). “Finding your people” is often the advice given to newly diagnosed people, and I do agree - having people who get me and are like me truly started to make me feel like I wasn’t wrong for being who I am. I mostly found my people through social media, until I got to university and had more of a community available through the disability forum, but there are more and more community groups popping up over time.
Learning about the double empathy problem. Developed by Dr Milton, this refers to the fact it is not autistic people who are inherently wrong for not being able to understand or communicate easily with allistic people - rather, it is both sides that cannot understand each other due to not being able to experience the way the other brain works. This causes a breakdown in mutual understanding which both parties must work through, rather than autistic people being seen as wrong or broken for not experiencing the world and particularly communication and emotions the same way6. This is another theory that helps me to understand my brain as different, rather than wrong, and is helpful to explain to allistic people.
Leaning into my special interests & autistic joy. I am often at my best, my most comfortable, my most energised, when I have been able to spend time and energy on my special interests. Places like concerts and theatres (when accommodated significantly) make me feel such an indescribable feeling, and having time to be around my special interests regularly helps me to regulate myself too. Special interests might be anything - a topic, a thing, a film, a hobby, objects - and having space to talk about it, be around it is important. However, it has to be mentioned that in some circumstances, SpIns can become debilitating - like if you hyperfocus and don’t do anything else, or if you discover something problematic and have to find a way to pull away7.
Experimenting with aids and accommodations. You don’t have to know that something will definitely help you in order to ask for it. Trying things out and then withdrawing them if they don’t help you is a great thing.
Exploring my gender identity and sexuality. Although research is still understanding the depth of this, we know being LGBTQIA+ is more common in autistic people8 (I’m sure many of us could tell you about this anecdotally, research be damned) - knowing this, exploring it, and feeling able to be true to myself has been a long journey and one I am so grateful for. I also think many people who are cisgender and heterosexual never explore this, just believing they are the default - maybe it’s beneficial for everyone to think about it a little harder and truly know themselves?
Not wearing makeup for the sake of wearing makeup. I wear base makeup maybe once a year now because I hate how it feels, and instead just lean into sparkly eyeshadow and highlighter when I want to without any daily pressure. We know society sees makeup as part of professionalism for female-presenting people, but it isn’t unprofessional or embarrassing to not wear it.
Understanding trauma & cPTSD and how it relates to my autism. This is still a work in progress, but a lot of my trauma is inherently linked to my experience as an autistic person, as well as my autism meaning I engage with my cPTSD and with therapies differently. Whilst still being understood by researchers, it seems autism may be a vulnerability marker for c/PTSD which makes sense to me.9 I like the Embrace Autism guide to understand a bit more on this.
Doing birthdays and Christmas in ways that work for me and my family. When I was younger we did festivities in more traditional ways and it felt like so much stress and pressure. I hated feeling overly perceived, I hated lots of the traditions, I found the changes to structures extremely stressful. I’m still not a big fan of these days, but doing them in a calmer way, not being watched opening presents, not being forced to partake in things I don’t enjoy - all of that has helped it feel much less overwhelming.
Knowing taking more time is not a failure (and linear time often doesn’t work for us). It took me five years to do my 5 year degree, including a year out of study and two years as a part-time student, and knowing that this doesn’t make me less worthy of my degree or less of a student has been really important. Now, I lean a lot into theories about neuroemergent time from Marta Rose, who talks about elliptical time and spiral time and how neurodivergent people should not be so bound to the linear movement of time. Understanding these has changed how I view how I work and move in society.
Being anti-capitalist. Perhaps an unorthodox one to end on, but it’s true - disengaging with many aspects of capitalism and towards concepts of liberation has made me feel completely differently about how we see autism, disability and the concept of humans as a resource or productivity as our value. I recommend Empire of Normality and We’re All Neurodiverse as a starter kit to learning about this.
Thank you so much for reading this edition of Untangling - I kept this piece without a paywall to allow this information to be accessible. If you’d like to support me, you could consider becoming a free or paid subscriber, or buy me a coffee.
Some places you can go from here:
Buy my book, All Tangled Up in Autism and Chronic Illness
Find out some of my favourite books on neurodivergence
Citations, notes and additional resources:
Temple Grandin helped to originate this concept in 1995, and wrote a personal account about it a little more recently: Grandin, T. (2009) ‘How does visual thinking work in the mind of a person with autism? A personal account’, Philosophical Transactions of the Royal Society B: Biological Sciences, 364(1522), pp. 1437–1442. doi:10.1098/rstb.2008.0297. I don’t agree with all of the ways Grandin discusses autism in a medical sense, but it is interesting nonetheless. For a more accessible guide, I recommend the Embrace Autism guide.
Hypermobility is found to be 50% in the autistic population compared to 20% in the general population, as well as increased pain and dysautonomia seen in autistic people, ADHDers and those with Tourettes. From Csecs, J.L. et al. (2022) ‘Joint hypermobility links neurodivergence to dysautonomia and pain’, Frontiers in Psychiatry, 12. doi:10.3389/fpsyt.2021.786916.
I write about interoception and the sensory system in depth in my book, All Tangled Up in Autism & Chronic Illness. There is also Interoception and Regulation: Teaching Skills of Body Awareness and Supporting Connection with Others, and there is some excellent stuff about this in Safeguarding Autistic Girls and How To Be You. I quite like this guide too.
The Royal College of Speech and Language Therapy has a useful guide to AAC.
I recommend Walker’s book Neuroqueer Heresies, but you can read some of the essays from it on her website including this one about the neurodiversity paradigm.
There are several papers on this due to Dr Milton consistently developing it, but this one is a good recent one: Milton, D., Gurbuz, E. and López, B. (2022) ‘The “double empathy problem”: Ten Years on’, Autism, 26(8), pp. 1901–1903. doi:10.1177/13623613221129123.
This is something there just doesn’t seem to be much discussion of in academic resources unless the paper is not neurodiversity affirming and is discussing our special interests as restrictive or abnormal in focus. I disagree with this, but do think noting the aspects that can become debilitating is important nonetheless. I really liked how nuanced this Medium post is about the topic.
Current research suggests it is 3-6x more common to be LGBTQIA+ in autistic people - this is perhaps less than the reality due to lack of diagnosis in marginalised groups - but still already shows the significance. Research includes Warrier, V. et al. (2020) ‘Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals’, Nature Communications, 11(1). doi:10.1038/s41467-020-17794-1.
From Haruvi-Lamdan, N., Horesh, D. and Golan, O. (2018) ‘PTSD and autism spectrum disorder: Co-morbidity, gaps in research, and potential shared mechanisms.’, Psychological Trauma: Theory, Research, Practice, and Policy, 10(3), pp. 290–299. doi:10.1037/tra0000298.
Thank you so much for this - I was late-diagnosed as autistic a year ago, after a couple of years of wondering. I'm still in the beginner stages of unmasking and trying out adjustments, and this is a really helpful list!
Wow thank you, this feels so validating. I do most of these already, but I feel less alone. Also #18????? I guess I never thought about how horrible all those self help books written by neurotypicals made me feel sometimes???