My Complicated Relationship With Food

Like many autistic people, my relationship with food has been strained at best. It starts with the small amount of generally plain food that I eat, ensuring they do not touch on the plate and extends to the time where I was only eating maybe two meals a day, if I was lucky. Food, of course, goes on to influence body image and I’ve been thinking about it a lot recently. They’re so intrinsically linked with both each other, but also mental health.

So let’s start at the beginning – I’ve always been a ‘fussy’ eater. I think it’s easier when you’re a kid and you go out to eat because every menu had chicken nuggets and chips. As a kid without a diagnosis, you’re a fussy eater and it’s not worth trying new things. I’m not saying anyone is to blame for this, just that it’s not worth the meltdown-that-wasn’t-known-as-a-meltdown for anyone involved.

It wasn’t until I went on brownie holidays and school residential trips that I began to hate food. At home, it was fine. Not a problem, my mum would cook food I liked. But I distinctly remember a trip when I was about 8. It was a brownie camp where I’d been okay with food, finding something to eat from the limited choice that I could just about feel comfortable eating at every meal. Except this one lunch time. It smelt too bad in the canteen area where all of the options were just not in my small realm of foods I liked – the smells were overpowering and was simply not going to find something new. I diverted out of the queue and went to the salad bar, sitting down when my brownie leaders and the people from the camp came over. Obviously, they were concerned I was not eating enough but I insisted I did not want the full meal. They got me another salad that was bigger and multiple slices of bread. I understand, now, why they did it, but at the time – as an autistic person with no diagnosis and not even a vague idea of my identity – I despised it. I was trying not to cry, because I didn’t even like the bread or salad much, I just wanted to get through to dinner time. Every mouthful felt like a huge lump in my throat that made me feel gradually sicker. I’m sure I threw out the ‘I don’t feel well’ excuse about not wanting a full meal. It wouldn’t be the first time. I was desperate to finish up but when I’m not a huge fan of a food, I can only stomach the smallest amount at a time. I was so slow, that I missed the whole lunch break to talk to my friends and almost missed the afternoon activities.

From then on, I had a huge fear of food on school trips and other times I was away from my parents. I’d enjoy the day until meal time, where I would freeze and sincerely hope I’d either like the food or be able to sneak away with only eating the smallest amount. It wasn’t like I had the diagnosis to be able to say ‘Emma’s relationship with food is different, don’t worry if she doesn’t eat’. It was awkward. On a later trip, I distinctly remember saying what, at the time, I thought was a lie to a nosy classmate who asked why I didn’t eat much, I said “I’m just sensitive to tastes and smells.” It’s true, though. Every trip in secondary school consisted of a suitcase of foods I could eat after sneaking away from the dining area, but at primary school this wasn’t really an option. I hated feeling like I was breaking the rules when I ran away without eating anything but it was the only option I had.

To bookend one of my first trips away with the last, we had the final school trip I went on. This was when I wasn’t eating much on a daily basis anyway, more on those mental health issues later, so my mum and I organised a meeting with the teacher leading the trip. I got my mum to emphasise “Emma doesn’t eat much – don’t force her to!” I was less concerned with food then, and enjoyed the trip more as a result. No one was watching me eating, frowning thinking I should eat more. To be honest, three small meals a day was a vast improvement. Although, I did have to stop eating bread rolls for a while, as dry rolls were the only food I really liked there.

Even on regular days, lunchtime was a battle. If you’re at school, you eat sandwiches, right? I didn’t. The combination of textures was a huge no from me, and even these days I don’t really eat sandwiches. I used to dream of being allowed home at lunchtime to have beans on toast or crumpets – any food that I liked. Another problem is that when you eat such a small range of foods, you can get bored before too long. After three weeks solid of dry pita breads, you want something else. So I’d have crackers, but then I’d get bored. The extremes that I think make up autism, to be honest. One way or other. Only eating or entirely bored of eating it.

Like I said, at home I was fine with food. Eating out became trickier because for some unknown reason, in adult meals, they decide to put things on top of each other and add a lot of unnecessary extras. Maybe that’s just me, though. Eating out was an experience in itself. It had to be a restaurant I knew, ordering myself was impossible and if the item I wanted was in a different place on the menu? No chance of a successful evening out. I don’t think people realise how prevalent food is in your life unless you have issues with it.

In the middle of my burnout and significant mental health issues, I wouldn’t eat. It’s not necessarily that I didn’t want to, but I’d forget to or not have the energy to get it. Put it this way: if you can’t get yourself out of bed, food isn’t on your mind. So I spent many days in bed until 4 or 5 pm, having not eaten since the previous evening but not being able to process anything but the fear I had of the world correctly, so the feeling of hunger just wasn’t decipherable. Eating a child-size meal was probably a push sometimes, and it – like the rest of my mental health – had been a downwards spiral for years in the making. My relationship with food was just the most disordered it has ever been. Put the generally autistic I-don’t-eat-many-foods issue on top of a lack of energy to do anything but be anxious and you get a scenario of food being hell. I didn’t even know if I wanted to eat, let alone what.

Naturally, I lost quite a bit of weight and was painfully skinny in areas. My hip bones jutted out of my body so much they looked sharp and my rib cage was pretty much on view. When I got dressed, I drowned myself in big, baggy t-shirts and plain, dark colours that would not draw attention to myself. I’m pale as it is, but not leaving the house left me looking like a ghost, something helped by my permanently anxious expression.  There was never a moment where I looked in the mirror and realised how skinny I was, I didn’t have the energy for that. My body had become an unknowing metaphor of my mental state so much so that I didn’t even look in the mirror to find out. My body was not well cared for, inside or out.

I disappeared from pictures for quite a while. Those that do contain me show just my head and most have a smile that barely reaches the eyes, if one at all. I don’t look happy or comfortable in who I am at all and honestly I didn’t feel it. It’s not until recently that I’m at a comfortable weight and wearing clothes that don’t attempt to hide everything about me. I’ve never been super self-conscious about my body but clearly I had been enough so that I tried to hide.

My relationship with food can still be tricky. I remember to eat these days but I still despise the smells of some foods. If they’re cooked in the house, I get a warning and disappear into my bedroom, smelling the strawberry hand cream that covers my hands. I despise sauces – liquids and solids generally are a terrible mix – and my realm of food is still pretty small. Nevertheless, I feel that I have control over my relationship with food. I don’t like it? I won’t eat it. I feel up to trying something new? Go for it, but don’t push your limits. Food is so

much less complex as I’m becoming am adult. Yes, restaurants are still awkward, but I can usually find something – even if it’s just a side order. And the people important to me know my limits. They’re not going to make me eat food I don’t want to. My autistic relationship with food is very much there, but my mental health relationship with food is a lot better.

MEAnd this is me yesterday. Happy and healthy yesterday and the place associated with my longest standing special interest, having been out for food earlier that day and about to try something new.

Happiness

Yesterday, I was in the car with my mum, dad and sister. We were discussing all sorts of things and my sister brought up a lot of questions to my Mum and Dad about the who was the best behaved child and other random memories. We were discussing something that I can’t even remember, a memory that we were trying to place in the history of our lives. I threw out an age, “Was I about 14?”, and her response was profound and honest – “No, it was when you were happy.”

It got my mind back onto something I’ve been thinking about for a long time – the idea that I’m the happiest I’ve ever been. I can’t recall so many days where I wake up feeling okay and when I don’t, it doesn’t knock me back for weeks. I don’t recall so genuinely content with my life and having legitimate aspirations I can try to achieve. My life isn’t completely ruled by my anxiety but I also know my limits , I know when to push that anxiety and when to leave it. Sitting here writing this I just feel happy. I’ve got the highest grade ever achieved on my college work, I’ve got a job – a fulfilling job that makes me excited to leave the house, and I’ve looked around a University and cannot wait to think about my future there.

I’m genuinely so content that happiness is a realistic possibility everyday. I actually want to leave the house and find myself going crazy if I haven’t left the house before work at 3 o’clock. Now I’ve finished college for the year, I’ve started teaching myself further science because my love of learning is back. I’m comfortable with who I am and I don’t want to hide it, whether that’s emotionally, physically or autistically.

And being so happy just reminds me how grateful I am. Grateful to my family, grateful to my friends, grateful to the medication I take. Grateful that I can live life again when making informed decisions based off my neurotype and my mental health. It’s weird to think that I was so gradually unhappy, but I only noticed it when I experienced the biggest amount of happiness. And that’s why I’m grateful. You can never put things into perspective until you experience something else, and I’m just so glad I can experience this happiness because it means that I will never go back to where it was. It’s too much to lose.

 

A Somewhat Incoherent Ramble About Struggling

We all struggle sometimes – and that’s completely okay. To admit it, is in fact, even better. But that doesn’t make it easy to do so.

Things have been rough. My physical health is not great and, as always, it’s taken a toll on my mental health. Being hypersensitive to pain doesn’t help, either. It’s weird because this time of year is usually when my mental health gets better, but it’s got worse. I know it’s just stress. I’ve got a lot of assignments to do and everything’s become a bit too much. I walked out of college the other week as a way to try and cope, I’ve been getting home from college and laying in a dark room for a while, crying and melting down more often and I’ve ordered a weighted blanket to help me sleep better, if that’s any indication of how things have been going.

My biggest struggle at the moment is feeling that I’ll burnout again. It’s maybe my biggest fear. I can’t go back to feeling scared to leave the house and leaving my bed a couple of times a week. I’m not there. And I won’t let myself be there again. But it doesn’t change the fact I’m scared.

I think there’s something scary about admitting to struggling when you’re autistic. We’re often told that our lives are struggles and protesting against this becomes normal. It’s ridiculous but I fear that people will change their ideas about me if I say I’m struggling. Something about protesting that I don’t need curing and that I’m never going to be ‘normal’ makes me feel like I shouldn’t say that I’m struggling.

And that’s exactly why I should.

Being honest about this is important for me, but not just internally. Admitting to myself that I’m not doing well is difficult, but telling anyone else is harder and I wish it wasn’t. The stigma around mental health and autism is huge, and helps no one, and combining them together feels hard and scary to break. It’s not though. That’s why this post is shorter and less coherent than usual, but hopefully, I’ll be back on it soon.

I’m not completely okay, and that is completely okay.

The Best Advice I’ve Ever Recieved

Social anxiety has been a part of my life for a really long time. Those constant flashbacks to times I said stupid things that make me want to hide forever. The way I’ve sounded like Siri going wrong when I haven’t known what to say. And that the perpetual fear of social situations, that grew to meaning I didn’t want to go anywhere with people. Those were just facts of life.
These days, I take an antidepressant that helps me feel incredibly neutral. From there, I can have emotions that seem more relative to the individual situation. I don’t lie awake at night thinking about the stupid things I said that day, although that’s probably helped by the sleeping medication. I don’t fear people in general because I know that they will talk at some point in our interaction. Overall, being on that medication has changed my life.
Something else, however, has also made a massive difference to my life. Interestingly enough, it wasn’t therapy or a meeting with a psychiatrist. It was one of the many conversations I had with my former school support worker.
She, in all honesty, it’s probably the reason I’m here today as the person that I am. She listened to everything I had to say and took it on board, finding solutions to every problem I had and helping me at the lowest point in my life. She did so much for me that I still think of the way she did things, the way she help me and the things that she said that have made such a difference to my life.
In one of the long conversations that we had discussing everything about my life, diagnosis and problems I encountered she said something that seems to have changed my life. I was telling her how I found people so confusing and how my social anxiety just made me feel so awkward to the point where I hated every word that came out with mouth. Despite the negativity, I believe I mentioned something about my mind racing and forgetting everything I planned to say, every time I tried to talk. Her response changed everything.
She said “It doesn’t matter if you take a moment to breathe and think about what you’re going to say. No one’s going to make fun of you, in fact you’re just proving that you’re thinking through what you’re saying in an intelligent way. It’s a positive thing.”
I’m not exaggerating when I say that this changed everything. The first day of college I was trying to make friends and I was scared about what to say – everything in my mind went blank, so I paused. After a breath, a whole possibility of things to say swirled around in my mind. I chose one and the conversation moved on. In my job interview I was asked a question that made my mind go completely blank, so I paused. The words came back to me and I took a breath. I found something to say that didn’t make me feel like I was being ridiculous, it made me feel confident in the words that I would say. I could probably even go as far as saying that it helped me get the job.
I will never diminish the impact that the medication I take has had on the way I can communicate with the world around me without feeling like I hate myself. But I know it’s not just the medication. Sometimes, words of simple reassurance and basic advice can change the way someone thinks, and in turn, their life.

My Sensory Box

IMG_2891I have a box that resides in a drawer. It’s my last stop before leaving the house on a rough sensory day. It’s my first stop when I find my hands itching to fiddle or messing with something that could be more dangerous. It contains things to occupy my hands, pretty colours to colours look at and earplugs for the louder days. Perhaps it is is best described as a coping mechanism. For those days when everything is too much or not enough, and every kind of sensory input is wrong. Or just for the days when I need the passively stim. It sometimes comes in the form of a black make-up bag when I’m on the go – but mainly, it is my sensory box.

Stimming is such a natural part of life as an autistic person and stim toys are tools that help me slim differently. Sometimes they actually things designed to help me, and sometimes their objects are required over the past few years that have helped me anyway.

Tangles are one of my favourite in toys that exists. In the picture at the top of this post there are three, technically four. They are the chains of plastic that make a great tools to fiddle with. The pink, blue, yellow and clear coloured one is textured on the outside, which helps me out on days when I’m more prone to scratching. They provide a tougher form of sensory input that’s not dangerous at all. The blue, yellow, green and clear one is also texted that I’ve got more of a squishy outer coating that provides a drastically different but also great kind of input. The metallic pink one is closer to the standard kind of tango, as it is smooth all over. Lastly, the deep blue chain in the picture is made up of tangle parts, I find it good to loop around my finger and stim with. As stim toys go, tangles about very discreet and pretty commonplace. There’s a reason I’ve got so many!

Chewellery – or chewable jewellery – is also a major important thing for me. It stops me grinding my teeth and biting things like the caps of pens and sometimes my hands. They’re made of food grade silicone, which means they’re safe to chew. The picture shows two of them- I have two identical dulcimer pendants from the amazing stim toy shop stimtastic. The pendants are designed for lighter chewers, and as my chewing has become a little more aggressive, I use two at once. They’re a little bit more of a discreet way to chew than other chewable items, and so far no one’s really questioned me on it.

Those are probably my most used sensory tools, but the picture shows a lot more. I have the somewhat universally recognised fidget cube (which is now looking a little bit dirty from its use), a smiley popper toy that’s good for some resistance, a toy that I have no idea what it’s called but it’s basically a bit of purple mesh with marble inside, a couple of different spiky things that can be pulled instead of my hair, ear plugs for when things get too loud and a couple of other bits too.

And there we have my sensory toys and tools that I use to cope with tough sensory days and they need to passively stim. Hopefully by the time you’re reading this, it’s April and marks the beginning of my (hopefully) two monthly posts. I’m going to try and post a little more regularly about a variety of things, let’s hope I can stick to it this time!

Labels: Why They’re Great

Up until the age of 15, I didn’t like myself very much. I thought of myself as ‘awkward’ and ‘weird’ in a way I couldn’t explain. Physical appearance hadn’t overly bothered me throughout my life but who I was inside had. I’d always felt different to my brother and sister, but growing older meant I felt different to everyone. I desperately wanted not to care but from the age of thirteen onward I was researching everything I could. Like physical and mental health conditions, hoping something would apply to me and someone could tell me what on earth was going on. The answer hadn’t really crossed my mind. By when, in the diagnostic appointment, they said “we think you’re autistic”, I was beyond relieved.

I’m autistic, not ‘weird’. A simple word summing up my entire life was all I needed. I’m not limited by a word that has given me the chance to live a proper life again. I can make friends and go “I’m Emma and I’m autistic, ask me questions if you want, I’m just telling you who I am”. I can get a job, telling my future boss “I’m autistic, and I want to help people learn, especially people who’ve struggled with understanding the world like me” (true story!).  I can tell the world “I’m autistic and I couldn’t care less if you look down on me for that. If you want to look down on me, get out of my life.” Most of all, I can leave the house being me, flapping my arms and not caring, if I want to. I’m not hiding who I am, because the effort it took caused a burnout-breakdown I never want to see repeated.

Not only that, but saying “I’m autistic!” or “I have anxiety disorders!” are, to me, useful descriptors that tells you who I am in a concise way. It’s way easier to say “I’m autistic” than “I flap my hands sometimes, can have vicious meltdowns, can’t communicate brilliantly, don’t understand social norms and codes, am hypersensitive to pretty much everything and have only seemed to talk about Harry Potter for the past six years”.

There’s this idea that labels limit you. I’ve had conversations before where I’ve even been talking about how much I love labels, only to be told “but, you don’t want to limit yourself, you’re not just autistic.” Not only does my life revolve around being autistic (more on this in my Language: Identity vs Person post) but I love the fact I’m am who I am. Being autistic isn’t limiting, a lack of support is.

I didn’t have support for the first 15 years of my life, and I hated myself.  Having a label, and the access to support that it brings, helped me learn to love who I am. How – in anyway at all – is that limiting? I’m the happiest I’ve ever been in my life. And yes, to some people, labels seem ridiculous. They seem limiting and harsh and unnecessary. But I wear my labels like they’re my favourite clothes, and I’ve never felt more comfortable in my own skin.

Meltdown Memory

It’s a simple image, grandparents surround by their grandchildren. It’s a family celebration of their golden wedding anniversary, and part of that is taking photos outside of their house; everyone is dressed up nicely in new clothes, most likely brought for the special occasion. The oldest, and thus tallest, grandchildren stand at the back, while the two youngest stand one either side of the sitting-down grandparents. Everyone is smiling, including the girl to the right. However, she has blotchy cheeks as she does so. Her smile is not quite as genuine as the others, even though she’s delighted to be there. She’s been crying but hopes it doesn’t show. The girl to the right is me.
It’s lovely to stay with – or near by – my grandparents, their house has always seemed to be a happy place for me. I’ll never forget, nor fully lose, the excitement associated with the early morning get-up to visit them. Admittedly, it’s the only time I willingly get up before 7am. There’s memories of dressing up with the special dressing up clothes, kept in pink cardboard chest in my grandparents bedroom, or playing shops with the set of small cardboard boxes and plastic tins, using the plastic shopping basket they were kept in. As I’ve got older, the memories are more of interesting conversations with Grandpa and height jokes with Nan. Memories extend further than this, though, as most surfaces and walls hold pictures frames, displaying other memories. These range from school photos of us grandchildren and graduation pictures of both children and grandchildren to holidays in a variety of locations and or important birthdays. And, of course, among them is the golden wedding anniversary picture.

I remember it surprisingly well, but then again, I often do with days like this. I’m fairly certain that we – my mum, dad, brother, sister and I – were staying with my auntie, although there’s a chance we were at a hotel. This time is not quite as clear as later on that day would become. We’d gotten dressed up into our nice clothes and headed to our grandparent’s house. There, we chatted a little, before preparing for pictures. It was just before we would begin taking them that I realised something: I’d forgotten my jewellery.

I was only eight, and the jewellery was not impressive nor important. I believe it was a necklace with my name on that a friend had brought me from her holidays, and possibility a bracelet too. It wasn’t important but it distressed me in a way that’s difficult to explain to neurotypicals. I was supposed to wear it. I’d packed it for the reason of wearing it. It then felt wrong without it. It then began: the meltdown.

I didn’t have a word for it at the time, and to everyone – including myself – it seemed like a childish tantrum. It’s important to distinguish that it wasn’t. I’ll go more into this is the next post I have planned, set to work on the informative side of this but for now, here are the simple differences: it didn’t have a purpose, I wasn’t looking for a reaction, I wasn’t trying to communicate something I wanted. I was distress by the situation not being as I expected.

Looking back, it seems small. I have meltdowns quite a lot, I always have, but they’re normally over larger things than forgetting something, unless things have been getting to me. Maybe the noise of everyone greeting each other, the social event, the eye contact I was making or the difference in routine contributed in some way? Maybe it’d been things from weeks ago that I’d pushed down that resurfaced? Maybe I wasn’t fully physically well, making me more vulnerable to such a meltdown? Maybe I was still adjusting to the first-time-ever-worn clothes? Or maybe it was simply the necklace and the necklace alone.

Whatever caused it, I vividly remember having a meltdown in my grandparents back bedroom. I remember a lot of tears, difficulty breathing and general confusion. Again, something I plan to go into next time, but I can only describe it briefly as being in the sea, trying to swim but the waves are too harsh so you give up. It’s hard to focus on what is actually around you, the creatures you might see or the brilliant day it is, because you’re dealing other things.

I can almost hear my mum reassuring me that it’d be okay, to no avail. At the worst point in a meltdown, I can’t be calmed. You’ve got to ride the waves with me for a while, before we begin to swim again. My cousin came in, a couple of minutes later, kindly offering me her necklace, but I declined. It didn’t change the fact I’d forgotten my own. Again, float before you swim.

When the height of it all passed and things began to get better, a level of panic set in. Cue the next stage of the meltdown: desperately trying not to cry because you’re worried of how the blotchy face will show in the pictures, but crying seeming like the only way to deal with the anguish caused by the situation.

I think, more easily consoled this time around, my mum dusted a little powder onto my face to reduce the redness, while she reassured me that I didn’t need a necklace, it probably wouldn’t be noticed in the pictures anyway. The same with my red face. To be fair, it isn’t that noticeable, but photos, for me, have always vividly triggered memories. Combined with the fact meltdowns have always remained in my mind, more vivid than photos maybe, mean I remember it clearly.

The rest of the day, once again, falls into the realm of a blur. Nothing is quite as prominent as the meltdown, but I’m sure I loved the time spent there, as it was time spent with my grandparents and family.
This post is something that’s been playing on my mind recently, and as I mentioned, I hope to create more informative follow-up. It’s a reflection for me, part of collection of them I’m beginning to post, on autism things that I didn’t know had a name at the time.

Finally, I’d like to thank my wonderful Nan and Grandpa for supporting me through everything and accepting me for who I am. If you end up reading this, I hope you remember how wonderful you are (and how short you are, Nan, not that I’d ever let you forget!)