• This year was my 39th Christmas as an autistic person, but the first Christmas that I have known I'm autistic. It's been interesting. One of the things I have found a little weird about exploring my autistic brain is that I keep getting these little moments of "Oh, that's why I've always done this...", and this Christmas has been no different.

    I had a big one today. I've been reading lost of posts from other autistics on Twitter talking about coping with Christmas - the sensory overload, having to be social, and how they survive it all - all the while thinking that I've never really had issues with Christmas. I did have a little weep yesterday (Christmas Day itself), but that was because I had a stinking cold and didn't get enough sleep... wasn't it??

    Today I had a bit of a realisation. My husband dances with the village Morris side, and Boxing Day is a big day for them. As I was driving over I had a sudden flashback to last year, sitting crying in my car waiting for Husband to finish dancing so I could go home and back to bed. When I thought about it, I realised I've often struggled on Boxing Day. It seems to be the moment when everything 'hits' me, and the more I thought about it the more I remembered regular Boxing Day meltdowns over the last few years. At the time, there was always something to attribute it to - we were going through a tough time and it had all got too much being the main one. Today I started wondering if there was something else to it.

    In general, I am pretty bad at noticing when I'm getting overwhelmed until it really is too much. I suppose it comes from nearly four decades of masking. I will keep going and keep going, either until I keel over, or until the pressure is relieved, and then I keel over! I had a couple of meetings just before Christmas - both of them were only with one other person, and they were good, positive, and helpful meetings, but it was still too much. I got home and had to go to bed. It frustrated me that I hadn't noticed in time to be able to do something about it.

    I'm trying to get better at noticing when things are too much, but at the same time trying not to spend my entire life in my pyjamas under my duvet. As it transpires, I did go back out with the Morris today after dropping Tickle off at my mums, but I think mainly because I knew I didn't have to. Husband is so incredibly supportive and was quite happy for me to go back home and spend the day watching TV if that's what I needed to do. That knowledge gave me the freedom to make my own choice about it.

    My next step is going to be working out how to do this with the rest of my life. I've been approached about doing some work for a local arts charity next year, and I'm terrified at the thought of taking on an actual proper job instead of working for myself as a freelancer. I have absolutely no frame of reference for how to be successful as an autistic person in the workplace, and I'm not yet confident enough with my own needs and triggers that I can give particularly helpful guidance.

    I know it's a cliche, but I will have to take it a step at I time I suppose. Keep trying to notice what's going on with me, and keep trying to work out what I need to do to be a fully functioning, happy, human.

  • I am taking part in the Instagram Chronic Illness January Photo Challenge, and I thought I'd try and write a few blog posts to go along with the pictures I'm posting. Today's theme is 'Diagnosis'.

    One of my main motivations for writing about my experience with autism - aside from using the process of writing to help me work through my thought process - is to provide another voice for women who have lived a significant portion of their lives without knowing that they're autistic. I'm certain I will know other people who are on the spectrum, but haven't realised it, and if writing honestly about my experiences can help someone else make a connection with their own life then I feel I ought to do it.

    So - diagnosis.

    The first thing I did, before I even thought about seeing my GP, was an awful lot of online research. The process of thinking 'oh my goodness... I think I might be autistic... everything suddenly makes sense...' was quite a nervewracking one, because what if I was wrong? I don't even know if I can explain how anxious it made me. Having just had this humongous lightbulb moment, which appeared to explain everything that I found difficult about life, and everything that I'd struggled with in the past, what if I was mistaken, and it turned out I was just not very good at being a human - which is how I already felt a lot of the time. I have worked so hard all my life to fit in, to be liked, to make other people happy, and never quite feeling like was getting anything out of it. I couldn't work out what I was doing wrong. Here I had potentially discovered an explanation for all of that. Maybe.

    I had a lot of preconceptions about what autism is, and isn't, and most of them were based on what I had learned during my psychology studies in the late 1990s and early 2000s. Back in those days, there was a very male-dominated narrative around autism (there still is, but it has got a bit better at least) and we were taught that women were very unlikely to be autistic, but when they were, it was very severe. We now know this is not entirely true.

    There are some great resources online describing the experiences of autistic women, and I would encourage anyone who thinks they may be autistic to have a look at these.

    National Autistic Society

    Tania Marshall's Aspienwoman screening checklist

    Samantha Craft's unofficial checklist (this was the one I found that made me realise I was autistic)

    The Aspie Quiz (a screening tool - worth looking at)

    Musings of an Aspie

    What women with Autism want you to know

    The Psychologist

    I spent a long time reading everything I could find online about women with autism. (The above list is by no way extensive, a quick google will give you a lot more to be getting on with!) I also joined in conversations on Twitter with other autistic people, a lot of them female and late-diagnosed, like myself. The #ActuallyAutistic hashtag is a great place to start, and #AskingAutistics if you have any particular questions.

    Once I was fairly convinced I was autistic, I decided that I definitely didn't want to get formally diagnosed, that just knowing myself was enough for me. Then I decided it wasn't. A lot of the autistic community are very accepting of self-diagnosis, and although I have no problem with other people calling themselves autistic on the basis of their own research, for me it wasn't enough. I couldn't allow myself to accept that I was autistic without an official diagnosis.

    It was scary though, not least because of the over-reliance of male stereotypes in the diagnostic criteria. I had been reading about how it is much harder to diagnose women with autism because it often displays so differently, and the testing hasn't really caught up with that knowledge. It took me a while to pluck up the courage, but eventually I went to my GP and asked to be referred for a diagnosis.

    In the area where I live, the adult diagnostic service is contracted to an organisation called Healios, who carry out all their appointments online, over video call. It was a bit of a strange idea at first, but it actually worked out really well for me.

    The first part of the diagnostic process was a questionnaire, which I went through with a clinical psychologist. There was 80 questions in total, and it took us about three hours to get through it all. (For anyone who's interested, it was the RAADS-r.) To be diagnosed as autistic you have to have had difficulties before a certain age, so for all the questions I was asked whether this was something I'd experienced as a child, as an adult, or both. I found it hard work, going through the questions. Some of them were unexpectedly difficult, making me think about things in a way that I hadn't before. Some of them I felt didn't quite apply to me, but nearly did, and I felt anxious about whether that might be the male bias in the test showing up. I found the sessions quite exhausting, and usually needed to lie down for a bit afterwards! My psychologist was lovely though, and really supportive.

    After the questionnaire was over, I had to see a different psychologist for what they called an 'observation' session. It's best practice for autism to have more than one clinician involved in the diagnosis, so don't be alarmed if this happens to you. The observations sessions were based on a test called the ADOS-2, and I found these even harder than the questions! One of the things I had to do was tell a story from looking at a series of pictures. I found this surprisingly hard to do and it made me quite emotional, but not nearly as emotional as when I had to make up a story completely from scratch, based on five random objects on the screen. The psychologist had done it before me (with different objects) to show me what he meant, and I remember doing a double take when he started telling me this story about 'Mr Paperclip' as it hadn't even occurred to me to animate the objects like that. When it was my turn I stared at the screen, trying to copy what he'd done, make something up, and I just couldn't. My brain froze. Even though the psychologist had literally just demonstrated how to do the task, I couldn't do it. I got quite teary over it, but I'm not sure my clinician really understood why. It wasn't really to do with the fact I'd failed at the task (he was reassuring me that I wasn't the only one) but more to do with the realisation that I was being asked to do something ostensibly fairly simple but my brain simply did not work that way. In a way, it was validation that it wasn't all in my head, but at the same time a wake up call about the fact that actually, some things are really difficult for me. All my life I have avoided stuff that I'm not good at, and I think I have some pretty deep rooted feelings of shame associated with failing. Perhaps that's something to explore another day.

    It took about three hours to get through all the stuff in the observations sessions (this was split over three sessions) and after that it was a couple of weeks before I was sent the draft report, formally diagnosing me as autistic.

    The report, again, was difficult to read. I think it's somewhat the nature of the clinical system at the moment, it's all done on a deficit-based model, and reading in black and white about all the things I'm not good at I found really difficult. At the same time, having a formal diagnosis was incredibly validating.

    If this happens to you, I would really recommend involving yourself in some more positive discussions around autism, and what it means to be autistic. There are some wonderful things about my neurology that make me exceptionally good at spotting patterns in things, that allow me to hyper focus on things I find interesting, that mean my attention to detail is second to none. I'm learning about myself more every day, whether it's noticing things about how I'm reacting in certain situations, or having a sudden lightbulb moment about something that happened twenty years ago. 

    My diagnosis was not the end of the journey, but the beginning.

  • Autistic people aren't supposed to be any good at communication. It's this word that is always used - deficit - like there is something wrong or something lacking from the way we choose to communicate. Granted, autism is a spectrum, and some people on the spectrum do find communication difficult, and aren't very good at it. But then, some people who aren't on the spectrum also find communication difficult, and aren't very good at it.

    I am *exceptionally* good at communicating my feelings, thoughts, opinions, and desires to other people. I say *exactly* what I mean, no more, no less. The trouble is, I have realised as I've got older, that most people don't like this at all.

    I have to admit it drives me slightly crazy. People are always reading things in to what I say that just aren't there - and I'm supposed to be the one with a communication problem?! I have been called manipulating, accused of always needing to get my own way, told I am undermining people, being bossy... it's really upsetting, and absolutely baffling. I don’t think I would know how to manipulate someone even if I wanted to.

    Yesterday I emailed someone saying 'could I suggest we try this...'. That's what I meant. I have an idea, I'd like to make a suggestion, what do you think of this? What do other people mean when they say that?? I'm struggling to understand, because based on the reply I got today I'm not sure whether I accidentally wrote 'I think you're doing this completely wrong.'

    I have had a few incidences in my life where I have literally been knocked sideways at how someone has responded to me. The first time I was still in school, and it was a music teacher. I've got no idea where it all came from, all I remember is that the teacher was pretty stressed out and I - trying to be helpful - said I'd be happy to take one of the lunchtime clubs if she wanted me to. I think I was about 15 or 16 at the time, a competent musician, and perfectly capable of taking a lower school recorder club. The next thing I know she is screaming at me, and I'm crying in my Head of Year's office because I have *no clue* what just happened. From her perspective, I think she's a useless teacher and that I could do a better job than she can. From my perspective, she was stressed out, I was offering to help ease the load.

    I know it wasn't my fault at all, but that isn't the only time this exact scenario has been played out, with a few minor variations. I'm always the 'underling' - I'm a TA and she's a teacher, I'm a new volunteer and she's been there for years - and she is always overworked, stressed, and very likely has her own mental health issues that are not being resolved. It always happens the same. I try to be helpful, they think I am trying to usurp them. I try to state very clearly what I mean, they say I'm being manipulative. The women do, anyway. The men say I'm pushy and aggressive.

    When my ex-husband and I split up we had a discussion (argument) that completely baffled me at the time. Back then I was gigging quite a bit, and early on in our relationship he had decided that he didn't like me driving home by myself after gigs, so would accompany me and share the driving if necessary. Over time, he got a bit bored of doing this, but he never actually told me directly Our conversations would go something like this:

    Him: I don't think I'll know anyone there tonight

    Me: Oh yes, Joe and Chloe are going, you'll be able to sit with them!

    Him: But I'm not sure I should just turn up to your gig

    Me: It will be fine, it's a ticketed event so it's not like it's a private party

    And so on...

    I thought he wanted to come, but was anxious about whether he would know anyone, or feel out of place. I had NO IDEA he was trying to tell me he didn't want to come. He thought I was pressuring him to be there.

    I, like many other autistic people, find it ironic (frustrating, hilarious...) that non-autistics think that we are the ones with the communication problem. Non-autistic people hint at things all the time, without really saying what they mean. They expect us to be able to 'guess' what's really in their heads. Maybe one day this will all be turned on its head, and people will realise that autistics had it right all along. Imagine how much easier life would be if people just said what they meant the first time.

  • I have been thinking a lot lately about identifying as autistic, and why - especially as a person who thought I knew quite a bit about autism - it took me so long to realise that I have it myself.

    There are still a lot of misconceptions about what autism is and how it displays, particularly in females. When I was learning about autism in the late 90s, the lack of theory of mind was an essential part of diagnosis, and we were taught that autism is much less common in women, but much more severe. As I've been doing more recent research, I've found I don't really identify with a lot of the prominent autistic female narratives that I've found in books or blogs. For this reason I've decided to explore this in a series of short blogs as I get a chance to put my thoughts down, partly as a way of making sense of it myself, and partly for any other women who feel different but don't quite know why.

    My life as it is now has been shaped by my autism, of course, but also by the unique set of circumstances that have presented themselves to me, the decisions I've made, and the people I've met. Autism is woven through the fabric of my being but that's not *all* that I am, so it's natural that it will come out in a slightly different way with me than it may do in others. I think it's really important to get a wide spectrum of voices speaking out on this, as each one will add to our understanding of what it can mean to be autistic. If you are reading this and would like to share your own experiences I'd be very happy to post a guest blog.

  • I have had a very mixed experience with the world of employment. I often feel like I haven't really achieved the things I'm capable of, haven't got where I want to be in my career. Where I'm capable of. I don't quite mean that I haven't reached the pinnacle of my career yet, I mean that I, as I am today, right now, ought to be doing better than I am.

    I'm pretty sure this is not a uniquely autistic thing, but there are a few things I need to unpack about why I've struggled in work, so that I can move on and do better. I also really want to do this in a balanced way, so I can work out what I do well, as well as what I struggle with.

    To the outside world, I think I look quite successful. People are often saying nice things about 'amazing' things I've done, but I have come to the conclusion that they are using completely different measures of success to me. It's quite difficult for me to marry up these positive comments with how I feel inside - again, not exclusively an autistic thing, I know, but I think there's an additional element in that I find it really difficult to understand how other people see me. (I have an awful lot to say on theory of mind, but that will have to wait for another day!)

    I'm thinking about all of this a lot at the moment because I've been approached by an organisation who would like me to come and work for them. I'm currently self-employed and the idea of working for someone else terrifies me - I've had some pretty bad experiences in the past. However, this job, and this organisation, are both amazing, and I would really like to see if I can give it a go. I have already mentioned my autism to them, and they are very open to working with me on accommodations but the trouble is, I don't really know what I need. I'm still at such an early stage of exploring it all myself that I have no idea of what to ask for. I've been talking it over with my husband and decided to try and work my way through some of my previous experiences to see if I can pinpoint why things went wrong previously, and also when they went well, and what was different.

    One of the things I love most about being freelance is the ability to have total control over how I spend my days. I once worked as a teaching assistant in a secondary school where I had absolutely no say in how my day was spent. Requests for assistance would come in to my line manager and she would assign me to various departments at particular times. I would turn up and be told what they wanted me to do. I didn't mind the work, as such, and I enjoyed the variety in my day, but I hated being sent here there and everywhere with no idea of how I was going to spend the day until I got there. The music teacher got really territorial over me, and used to insist that I be sent over to the music department because she thought it was demeaning that I should be pumping up basketballs in PE when I was such a talented musician. And then she would have me sorting out her sheet music and really didn't see the irony in that. I felt dehumanised, like a useful tool to be passed around, and I hated it. The stress of it made me ill, and I left.

    Shortly after that, I ended up working as an administrator for the Police, and I LOVED it. My dad told me afterwards that he'd thought I had a problem with authority, so was quite relieved when I managed to stick it out at the Police. At the time I was a bit affronted by that, but looking back now I can see why he thought it. I have no problem with authority when my values are aligned with theirs, I am clear about what their job is and what mine is (by their actions as well as in theory) and I feel respected and valued as a member of the team. When those things aren't in place, then yeah I guess I do have a problem with that sort of authority, and I also have a problem keeping that to myself!

    I loved it at the Police. There was a very clear hierarchy, and I may have been right at the bottom of it but my role was valued by the others in the team. I was clear on what my tasks were. Some of them needed to be done first thing in the morning, the rest I could manage as I pleased. On the whole I was trusted to get on with things, but some of the tasks would link in with what the Sergeant was doing so I always knew that she was keeping an eye on things, and she would come and tell me if she wanted something done slightly differently.

    So how can I summarise the differences between these two jobs and how they made me feel? Working with the Police there was a mixture of regular, daily tasks, and stuff that was different every day. Expectations were clear, and I understood my place within the team, and felt valued as a member. I had some control over how my day was spent, and trusted that my boss would be clear about whether a task was time-limited, and if it wasn't, would leave it up to me to manage.

    I think one of the key things I struggled with as a TA was not having any autonomy over my own time, but also not having any structure or predictability. I later became a teacher, so whereas my time was still arranged for me at least I knew in advance what I would be doing day to day.

    I absolutely loved teaching, but the strain of 'being a teacher' was too much for me. In addition to all of the social contact, which would leave me exhausted but not really understanding why, there was so much in the culture that I couldn't handle. The thing I probably struggled most with was that the things that thought were important about what I did at school really didn't seem to tally up with the things that the senior management thought were important. I worked really hard to make my classroom a safe and supportive space for the pupils to be creative, to try things out and take risks, and to learn how to support each other constructively, because these are the things I thought were important. It seemed to me that the senior managers considered the clothes I chose to wear were more important, along with ticking all the right boxes, attending all the right meetings, and making sure children lined up silently outside the classroom at the start of the lesson. (I was a music teacher for heavens sake, I actively encouraged them to make noise!)

    It was this mismatch of values that meant I couldn't stay in teaching, but there were other aspects I found difficult which I think could be useful to reflect on for future work, and these were all do to with my difficulty with executive functioning, or in other words, my ability to mentally organise tasks so that I could complete them. At the time, I'd never heard the phrase 'executive function', but what I did know was that I often felt scatty, lazy, or disorganised. My desk was always a complete mess (and yet I could find whatever I needed on there, so 'disorganised' isn't quite accurate), and I got in to trouble for forgetting to go to meetings, or more accurately, not realising that I was supposed to go in the first place. I did have one spectacular blow up with a school that ended up with me signed off with work-related stress, and negotiating a termination my contract with a pay-off (via my union) because of the way it was all handled. It wasn't until after I was diagnosed with autism that I could completely forgive myself over that. Don't get me wrong, they handled it terribly, and if I'd had enough emotional energy I should have taken them to tribunal over it, but I was so entrenched in this mindset that I was a terrible person because I couldn't organise myself in the way that they expected me to that I used to get panic attacks just driving through the village where the school was, and for a good year or so afterwards would feel anxious when crossing the threshold of any school.

    As I said, it's only since my diagnosis that I've been able to look back at that period of my life with self-compassion, and start to understand what I went through, and what led me to it. All of this happened around ten years ago, and I've only forgiven myself in the last two, three weeks tops. It takes a great deal of time, and emotional energy, to unpack thirty eight years of believing I was one way only to find that wasn't the case after all.

    I don't think I've got all the answers by any means, and I think I'll need to come back to this question again, but for now writing this post has definitely helped me work through some of the thoughts in my head. Moving forward in to 2019, if I do decide to take this job then here are some of the things I will need to bear in mind:

    - I like it best when I understand exactly how an organisation works, and how I fit in to it. If you want me to be a minion, I need to know that. You can't employ me as a 'specialist' if you actually want me me as a minion, because that is going to really bother me, and you won't like it when I use my specialist knowledge to tell you how things ought to be done. (That's a whole other story...!)

    - I need to know that my values align with yours, because if they don't I can't work for you. I just can't.

    - I need reassurance that everyone else in the team is doing the bits that they are supposed to be doing, otherwise I can get anxious and try to control everything, just to make sure it all gets done. If something needs doing in a certain order, I will be pretty much incapable of doing it outside of that order, so find it difficult to work around other people being late with things, for example. Equally, I like to know that someone is checking up on me and making sure I'm doing everything I'm supposed to be doing, and that they are going to tell me straight away if that's not the case.

    - I am quite capable of organising and managing my own time, but if you are expecting me to be at something that you have organised, and set the time and place for, then I may need reminding more than once.

    - I like variety, but I like it best within certain constraints.

    - I work best when I have my own bits of work that I am responsible for, and a certain amount of freedom over how they are done. However, you and I will need to make sure I completely understand what outcomes are wanted from these bits of work, because if you don't make it clear, and I do it how I think it should be done, I am not going to like it when you want me to change it all at the end.

    I'm sure there's more, but I think that's probably enough for now.

  • I've chosen noise as my next topic to explore as it's one that fascinates me, and I haven't quite got my head around it fully yet.

    I have a very mixed relationship with noise. I'm a musician by trade, and a music teacher. I LOVE noise. When I was teaching secondary music I could quite happily sit at my desk surrounded by a class of thirty kids playing keyboard while I marked my A level essays, and still be able to pick out the ones who were hitting the demo button instead of doing their work. My classroom was noisy and chaotic, and I loved it.

    On the flip side, sitting in a restaurant trying to have a meal I can literally lose the ability to speak, because I can't process the level of noise around me. Or maybe it's the type of noise - people speaking, glasses clinking, plates and cutlery, waiters walking around... I remember feeling a complete failure because every time I would go out for a nice meal with my ex-husband we would sit in silence. I found it really hard to hear what he was saying, even though he was only just across the table, and it was such a gargantuan effort to me to get my thoughts in order to think of anything to say.

    I LOVE loud music. I realise I'm using capitals every time I talk about music, but for me it feels necessary in order to emphasise Just How Much I Like It. It's excitement, anticipation, happiness, comfort, and good music often feels like it's filling up my whole body. There are certain pieces or types of music that make me want to climb inside the speaker and curl up with my eyes closed. (There are other types of music that make me want to vomit.) I write and arrange a lot of music for my choirs, and when I've got the basics of the harmonies together I like to turn it up really loud so I can get inside it and feel where it works and where it doesn't. When I used to use a laptop for this my husband would often walk in to the room and find me lying on the sofa with the laptop over my face, music blasting out.

    I sometimes find it difficult to process things I've only heard, rather than read or written about. My daughter loves to write stories, and is forever wanting to read out bits to me, but my brain can't catch hold of what she's saying in the same way as if I read the words from the page. I can follow stuff I watch on TV, although I don't watch anything particularly taxing or complicated - but I am much more comfortable if the subtitles are on.

    I have an awful lot of music in my head, and it all co-exists quite nicely together. When I'm leading my choirs I can sing along with any of the parts, and often switch between parts multiple times during a song. I have a complex relationship with rhythm, which seems very straightforward to me, but seems to baffle other people who just can't seem to understand how it all fits together. But there's no 'give' in my system - if I'm trying to learn something new and am following someone who's rhythm is just slightly off from where I think it should be I fall apart completely.

    I'm not very good at tuning my fiddle. This often makes me feel like I'm a sub-standard musician, but there are days when I just can't hear what the right note is, no matter how hard I try. Other days it's not so bad. If I'm trying to do it somewhere noisy I have no chance whatsoever. Once, I was so frustrated by my inability to hear things properly that I asked for a referral to ENT. This was following a cold, and I was convinced that I had problems with my ears, as things were sounding stuffy and mixed up, and I couldn't focus on things. After undergoing quite a lot of tests, I was told that my hearing was exceptionally good, and much better than most people's. It's only now that I'm realising it probably wasn't anything to do with what I could *hear* but my ability to process it.

    I'm not totally sure where I'm going with this post, so I'm going to leave it there. I still don't quite know what makes the difference between a noise I am going to love, one that is going to quietly irritate me, or render me unable to speak, or one that is going to make me feel physically sick. I would love to talk to anyone who has similar experiences with sound - please leave me a comment or tweet me @mummywriter.n

  • I thought I couldn't be autistic because I didn't have any sensory issues.

    Then I remembered how much I hate stickers. Thin, shiny bit of paper that stick to your skin. Urgh. And then they peel up at the edges and when you brush up against them they make a flicking noise... it makes me cringe. I hate going on training courses where they make you wear name stickers. I have learned to tolerate it, but I will take them off as soon as I can. The trouble is, taking them off involves touching them, and then when you try to throw them away they get stuck to your fingers...

    While I'm on the subject on thin, shiny bits of paper, I also can't stand receipts. When I was younger I literally couldn't touch them without feeling a bit sick. Now I have desensitised myself enough that I can hold one with a thumb and finger until I can find a bin to put it in. Or I stuff them into a particular pocket of my handbag (which I can then steel myself to empty all in one go). If I'm shopping with my husband or daughter I will just get them to take the receipt. My husband is always telling me off for not keeping them, but, urgh, WHY WOULD I DO THAT???? I can't think of many things worse than a draw full of receipts. Actually, I can. Finding one in the bottom of a shopping bag.

    After acknowledging that my dislike of thin, shiny bit of paper could potentially be described as a sensory issue, the realisations came thick and fast.

    Toothpaste makes me gag. I have given up completely on cleaning my teeth in the mornings because I've been sick so many times. I can usually manage ok in the evenings but I need to do an awful lot of rinsing and spitting, and if I'm stressed or feeling down, teeth cleaning is the first thing to fall by the wayside.

    I'm not even sure I will be able to write this next one because even thinking about it can make me gag... I am taking a break every few words to stare fixedly at other things in the room to try and anchor myself in reality and not get too drawn in. I hate, absolutely hate... oh god I can't even write the words. Let me try another way. I love to paint my nails. It's when they get too long that I struggle. I am lucky to have a very loving and tolerant husband who cuts them for me while I read a book or scroll through Twitter or *anything* to keep my mind off what is happening, because otherwise I will start to retch. I have been physically sick more than once when trying to do it myself. (I had to take a little break just then because I actually did retch a couple of times just thinking about it. I'm now under a duvet with a rainbow blanket next to my face because I really want to finish explaining this.) I will move on in a minute because I don't think I'll be able to fully explain quite how much this affects me without actually making myself sick, but I really want to get across just how distressing this is. Once I start to think about 'it' it gets stuck in my head and it's like it might as well be right in front of me. On a couple of occasions I have been at a friends house and found a discarded (deep breath, deep breath, deep breath) clipping on the floor or sofa and I can still remember those times in vivid detail even though one of them was more than 20 years ago. It is taking every ounce of self control I have not to start heaving again just thinking about them. The only way I can get over it is to force my mind on to something else, like the feeling of my blanket against my face, and the different colours of wool.

    Ok, back in the room, even if I've been so traumatised by what I've just written about that I can't remember what I was going to write next.


    Smell. I have a really sensitive sense of smell. I remember as a kid being convinced that I could smell the difference between hot and cold. When I was a teenager I was really self-conscious about being on my period, as to me I smelled totally different to normal.

    I am really sensitive to bright light. I have to have photochromic lenses in my glasses because it's too bright for me outside without a bit of a tint. I've recently started trying out contact lenses, but yesterday I was wearing them in a room with very bright strip lighting and it was glaring so much I had to switch back to glasses! It's like driving in the dark and the rain, when the headlights of oncoming cars dazzle you. It was like that, indoors, with those lights. I could hardly see for trying to blink away the flashes around the edge of my vision.

    I've always had an issue with the word 'cribbage'. I'm better with it now, as I'm pretty much desensitised to it, but when I was younger I used to hate it. It felt like it should be made of sticks. (No I don't understand either.)

    I have a ridiculous pain threshold. I was always the kid in the playground at school who could stand and take a Chinese burn without even flinching. Once I fractured a bone in my foot and didn't realise I'd done it. By the time I noticed that my foot had been really hurting for quite a while and got it X-rayed the fracture had nearly healed. I still don't know for sure how I did it.

    I really struggle to tell when I've had enough to eat, and often don't stop until I feel a bit sick. I find it hard to tell where my body is, generally, and often thought that overeating was for me, a way to really feel my body. I've recently given up sugar completely (including carbs like pasta and bread) and since then I can't always tell when I'm hungry. I am wondering if the fact that my blood sugar is (hopefully!) now more stable rather than up and down like a yo-yo means the feeling I always thought was hunger was more of a blood sugar crash than genuine hunger. I can sometimes tell that I'm hungry these days, but at other times I just start shouting at everyone and get a headache and all shaky, and then realise I haven't eaten!

    The 'not knowing where my body is' also means I bump in to things all the time. I am forever covered in bruises from catching myself on door handles. And sometimes I just fall over for no reason. Then of course all the usual stuff - itchy labels in clothes, not liking slippery textures of foods like mushrooms or onions. As a kid I was completely freaked out by manikins and waxworks, but I'm not really sure what that was about. So, all in all it would appear that I do have one or two sensory issues..!!

    Writing this has been really quite traumatic in places, so I'm going to spend some quality time with my blanket now.

  • So here goes, the start of a self-exploration of what autism means to me. In this first blog I'm going to talk about stimming.

    The term 'stimming' refers to self-stimulating behaviours that are often used by people with autism or other developmental disorders. The most common one you're likely to think of is flapping your hands - my son does this a lot when he's excited! Some people rock, some people jiggle, hum, bang their head, make noises; there's really no end to the variety of stims possible.

    My stim is not a very healthy one - I pick at my skin. I've been doing it since my teens, I think, but it has taken me the best part of twenty years to realise why. It's not the easiest thing to write about, as I've always been quite self conscious about it, and how it makes my skin look. I have a skin condition that means I get a lot of little bumps and miniature cysts on my skin and I find them completely irresistible to pick at.

    I mostly do it when I'm stressed, and when I've got a lot on my mind. For a while I wondered whether it might be a form of self harm, but that didn't sit quite right as pain was never the object of it, plus I also do it when I'm happy. It's not quite accurate to say it helps me to think things through, because my thoughts don't really follow a coherent narrative while I'm doing it - it's more like the process of focusing on my skin allows my brain to rest for a minute. It's sort of like a car where the engine is running but it's in neutral and just idling - not quite switched off, but not going anywhere, and no particular forces are being exerted on it as it just turns over quietly to itself. I find it really calming.

    I know it's not a sensible thing to do, and I know that I ought to stop. I've read a lot about trying to replace harmful stims with safer ones, but in truth I'm unlikely to do that because it makes me feel good. It feels a bit strange to be owning it so publicly after so many years of being embarrassed about it, but I have gradually come to accept it as part of who I am.

    I would love to hear from you if you have a similar sim - leave me a comment below! And if you're thinking 'I can't be autistic because I don't flap' - yes, I have had similar thoughts myself.

  • Yesterday was tricky. I was doing a new thing that I'd never done before, and which necessitated me being around lots of noisy children for a prolonged period of time. (Tap dancing in a showcase, if you're interested.) When we got home, I told my husband that he was not allowed to talk to me until I came out from under my duvet.

    Up until now, my duvet has been pretty much my only coping strategy, and as life is going through a difficult phase I feel like I'm using it all the time. Often I get home from work and go straight to bed. I've been eating meals in bed. I've been working in bed. It's good, because it does help me feel better, but it's quite limiting, and it's affecting my relationships with my family, particularly my children.

    We had planned to go out for a family walk yesterday afternoon, but for one reason and another I ended up walking quite a lot of it by myself. I was feeling stressed out and overwhelmed. My brain was going at 100 miles an hour. I started to wonder - had I remembered to take my antidepressants this morning? Was I due a replacement hormone patch? Why on earth was I feeling so bad?

    It occurred to me as I was walking that whenever I feel like that, my default position is to assume it's because I've forgotten my medication. Often I have. I take it, and sure enough, I'm feeling better within a day or two. The times I don't feel better again, well, maybe it's taking a bit longer to work this time. But yesterday, I had taken my medication, and I wasn't due another hormone patch - which forced my thoughts in a new direction. If it demonstrably wasn't that I was simply lacking in medication, then there must be another reason for how I was feeling.

    I quickly realised that my short stint under the duvet hadn't quite got me as ready for being around people as I had hoped. I was overstimulated, and stressed out. I have one particular piece of music that I can listen to when my brain needs untangling (it's this, by the way) and I decided I needed to stop, right there, in the middle of the path, not caring what anyone else thought, and listen to it whilst staring at the trees. So I did.

    As I started to feel better, my mind wandered. This wasn't a one-off. I feel like this a lot of the time, and have done for as long as I can remember. Can I really put it all down to not medicating myself properly?? Could it be that I have been experiencing sensory overload, which - unrecognised, and unmanaged - I have turned in on myself? Although I am autistic (diagnosed only recently) I don't really stim much; growing up as a teenage girl who didn't really fit in, it's not really surprising - I would have done anything to avoid standing out from the crowd. But at what cost? Stimming is really just a way for us to get ourselves balanced again, when one or more of our senses is a bit out of whack. If I was in the habit of regularly stimming, I wondered, would that have provided an outlet for the screaming in my head? Would it mean that I wouldn't need to spend so much time in bed? Maybe I could manage my feelings a bit better throughout the day, rather than storing them all up until I just couldn't cope any more?

    Looking back at my life, I see the pattern repeated over and over. I push myself to the limit, and then collapse in a heap. After my GCSEs I was ill for months, and then had chronic fatigue syndrome for a further two years - which only went away properly once my A levels were over. When I started work as a teacher, I could make it through until about Easter, and then invariably I would have to take at least two weeks off school because I was so ill and took so long recovering. And even now, the only way I was getting through the week was by being in bed every minute that I wasn't at work.

    A new thought started to form in my head. What if I could find another a way of regulating myself? Could I actually do a few small things, throughout the day, that would help me to cope and mean I had enough energy left to play with my children when I got home?

    As I walked, I tried a little experiment. I tried flapping my hands.

    A new thought started to form in my head. What if I could find another a way of regulating myself? Click to Tweet

    It felt good. It felt like there was a lot of energy in my hands, once I'd flapped them, and a bit less of it bouncing around my head. I tried tapping my fingers against my thumb one at a time. It made a nice little pattern, and that felt good too. The pattern became the underlying beat for a song that was going round in my head. I began to feel calmer. All of the energy that usually roared around inside my head felt like it had a bit of a place to go, for the first time. I felt like I could stop and wait for my family to catch up. By this point we were headed back to the car and I saw a Christmas tree outside a pub, with lots of flashing lights. I stopped to look at it while I waited for them. It was lovely. Looking at the lights made me feel calm.

    I'm going to experiment with stimming, and see what difference it makes. It feels a little odd to be doing it deliberately, but when you have been masking your autism for thirty seven years I think sometimes you do need to be a bit deliberate. Masking has become a habit. Turning my overload inwards has become a habit. I need to see what other options there are.

    Today I've been playing with a squeezy ball that I originally bought to put in the kids' stockings. I love it. I have been experimenting with different ways of using it - running it over the backs of my hands and my arms, for example, but I like it best on the palm of my hands. As I'm writing this I'm stopping every couple of sentences for a squeeze; interestingly, as I've gone on the squeezes have been shorter, and there's been more time in between them. I have also put in a massive order at Stimtastic, and I am really looking forward to trying out my new stim toys and jewellery.

    It hasn't even been a week since I got my diagnosis. This feels like it's going to be quite a long journey.

  • My autism diagnosis is still a really new thing for me, but I’ve been feeling more and more over the last couple of weeks that I wanted to tell people about it. One reason is because there are quite probably tens of thousands of people like me, who have no clue that they’re autistic, and the only way that is going to change is by amplifying autistic voices and providing an alternative to the ‘awkward geeky guy’ stereotype that most people associate with the word ‘autism’.

    The other reason though, I think, is because I feel this real need to live my new life as authentically as possible. My life since diagnosis has been a series of lightbulb moment - sudden realisations that explain so many different aspects of my past. I do feel like a different person. I feel calmer, lighter, more aware of myself. I’m enjoying getting to know the person under the many layers of masking that have built up over the last 38 years.

    My life since diagnosis has been a series of lightbulb moment - sudden realisations that explain so many different aspects of my past. Click to Tweet

    The strange thing is, I always knew I was masking - I just didn’t call it that. I always knew there was an ‘external’ me that was presented to the outside world, and an ‘internal’ me that was reserved pretty much entirely for my family. Close friends would sometimes get a bit of the real me, but the vast majority had to make do with the carefully constructed external mask. For quite a number of years the mask even had a different name, as I continued to work under my maiden name of Cat Kelly. In my head it made a nice distinction between the me who was out and about meeting people, doing things, and generally being busy, and the me who liked nothing better than curling up under my duvet and not leaving the house. In some ways it did make it easier to go to work - I could ‘put on’ Cat Kelly, and just get on with it. Cat Kelly was good with people. However, even before I was consciously aware of the masking I was doing, I used to get frustrated that other people couldn’t tell when Cat Kelly got back in the box and I was just me again. If I was working at a festival I was quite happy to chat to people after my workshops, or after my gigs, when I still had Cat Kelly on - but then someone would spot me in the queue for potato wedges and want to chat to me about something, and, although I did my best to be polite, I would be inwardly cringing at my awkwardness, and baffled as to how they couldn’t see that I wasn’t available for talking right now, because Cat Kelly had gone away and Cat McGill does not like small talk. (I mean, obviously I do understand that we look pretty similar from the outside.)

    The penny dropped a few months ago, when I had started to suspect I was autistic. I decided that I wasn’t going to mask any more, and did a complete revamp of my professional life so that everything was in my new name. (I did have to have the conversation a few times about how, yes, I had got married, but no actually not that recently, in fact it’s been about five years now.)

    However. Taking the mask off is quite a scary thing. I wrote in my last post about how I feel that I haven’t quite done what I ought to have done in my career, and today I’ve been wondering whether part of that is down to the masking. I’ve been writing regularly for about five years now, but it’s been scattered all over the place, hidden under various pseudonyms, on three or four different blogs. I’m quite happy to stand up in front of hundreds of people and teach them a song, but if they’re just there to hear me sing - even my Cat Kelly mask isn’t quite thick enough to cope with that. My whole life was about being in the background, putting other people first, making other people feel good, or look good, achieve something. And I was in the background, safe, and yet frustrated. Both wanting to be seen, and terrified of being seen.

    My whole life was about being in the background... safe, and yet frustrated. Both wanting to be seen, and terrified of being seen. Click to Tweet

    What I have realised over the last few years, but even more so over the last few weeks, is that people do like to read my writing. I write in a way that people can relate to, and a lot of people find it helpful. I like that, because I do like to be helpful, and the process of writing it helps me too, so it’s a win-win really. Today I decided to bring all my different writing together in one place. I’ll be honest, I nearly set up a new website for it. But 2019 is my year for streamlining my work, and living more authentically, so I decided to put it all here, in one place, as me. 

    As I have taken a break from trying to please all of the people all of the time I’ve had a chance to reflect on what I actually want to spend my life doing, what I want to give my time to, and what interests and excites me, and I really want to use this knowledge to get some focus into my professional life. Bringing together all my various strands of thought in one place has given me some new insights in to what connects them all. If I had to choose one word to summarise it all, it would be relationships. (Which is a little ironic, coming from the social-phobic autistic over here.) In some ways, it’s the autism that has nurtured this fascination of what makes people tick; it’s not something I instinctively understand, and for as long as I can remember I’ve been absolutely fascinated by it. A lot of my work is about using music to connect, build relationships, and bring people together. My first full-length book is about how to build a relationship with a child who’s been traumatised by adoption. My writing on autism explores my relationship with myself.

    It is nerve-wracking, thinking of having this all together, in one place, because there’s nothing to hide behind any more. It feels a bit strange that people who sing in my choirs might read this post, and realise that the Cat McGill who stands up in front of them every week acting like a wally to make them laugh is the same Cat McGill who is sometimes so wracked with social anxiety that I’m unable to leave the house. (In fact, in a very real sense, music provides a safe and structured way for me to connect with people.) I admit, I am nervous about revealing this much of myself, but it’s not because I don’t want anyone to know, and it’s not because I think people will judge me. Maybe it’s actually because I think they’ll probably say nice things, and I never quite know how to handle that. It means so much to me when people like what I do, but I find that quite difficult to express.*

    So perhaps we should make an agreement. If you’ve read this, and you like it, and you want to tell me about it, then maybe email me? Or tweet me, leave a comment, whatever suits you best. And if you see me in person and want to tell me then maybe limit it to a couple of words and a hug. I do like hugs.


    *Having said that, if you have a specific question, then ask away, as I can talk for hours once I know what you are interested in hearing about..!

© 2019 Cat McGill