“Am I a good mum?” I asked my son.
“Yes” he replied, “you’re always kind and don’t give punishments for no reason”
I’ve been a mum for quite a while now and I’m wondering when my natural maternal instinct will kick in! Actually, I don’t expect it to. Now that I understand my autism diagnosis more clearly and recognise how my sensory processing works and in particular my interoception – or sense of knowing how I feel; I am as likely to feel a natural mother as I am a natural teapot, or natural anything else.
If I don’t feel like a good mum then does that mean I’m not one? Of course not. I often don’t feel like I need the toilet – but I still have to go regularly! I did not feel that I dislocated my knee when it was twisted out of shape. And I may not experience feelings of intense love or anger or regret, but I know what these emotions are and although the feelings may not be there for any of these examples, they are still valid and very real experiences, albeit “felt” in a different way.
I “know” that I need to use the toilet regularly, I need to eat regularly, I need to be aware of my body and potential injuries. I “know” that when something upsetting happens I may not feel a strong emotion in my body but my sensory processing may become hypersensitive sometime later that week. I know that eventually, after a lot of intense cognitive processing, I may have a sense of an emotion – often long after the event. Or I may not. This is just how I am. I also know with every ounce of my being, that I love my family.
I was delighted and surprised when I discovered I was pregnant. It was unexpected and we had experienced previous losses. I enjoyed the experience of being pregnant and was super-fit and swam every day in the local pool – only just able to bend down and put my shoes on afterwards by the time I was in the last weeks of my pregnancy. I also walked with the dogs several times a day and was even riding my motorbike until the throttle cable snapped and I pushed it back into the garage where it sat for many, many years unridden.
My experience of birth was traumatic and lengthy. Eventually our son was delivered by emergency caesarean section. He was 11 lbs (5kg) and was certainly not going to come out via the traditional route. I remember desperately needing a can of fizzy orangeade and a ‘double decker’ chocolate bar straight after he was born and I begged my husband to get me them. I have never craved anything so fizzy and so orangey, so much in my life! My husband had to make a visit to the shops the next morning to exchange the new-born sized baby clothes for something that would fit this strapping lad.
We settled in to family life and I was very unwell for a long time and will forever be thankful for the continuous support my husband gave me to help look after both myself and our son. I have very few memories of family life, unfortunately, but I have lots to share about how we live; how we cope; and what we think about life, the universe and everything. Our family’s story is not solely mine to share and it is up to our son if later on he decides to describe incidents and events from his life or not. My own autism, and my own upbringing has influenced how we get along together. And this is what I will share in this series of blogs:
Food, eating and drinking.
Food is a huge topic to cover. We often take for granted that we eat our meals and snacks and hardly give a second thought to it. But there are multiple things going on with regards to mealtimes:
The environment – a familiar family meal at home, or a busy café, or eating whilst in the car, or on a picnic. The list could go on. These places vary in terms of social etiquette and sensory input. Anxiety levels can increase very quickly in certain environments because of the sensory processing demands (think scraping chairs on café floors, laughing customers and smelly food)
The ‘rules’ – when I was growing up, my family were very keen on table manners. I took to that quite well – I enjoy a rule and knowing how I ‘should’ behave. It can get complex though because rules can feel very contradictory to an autistic mind. “Eating outdoors walking down the street or sat on a bench in town is unacceptable and bad manners” but “Eating outdoors sat down on a blanket in a field is a picnic and a treat”. “You must use a knife and fork properly” but not for pizza, or for a buffet, or for the chip shop. But chips at home must be eaten with cutlery.
Interoception – knowing you are hungry, knowing you are full, knowing what you fancy to eat, knowing if you like something or not. Personally, I always opt for exactly the same thing when I eat out or I choose it before I get there. I know what I’m getting and I don’t have to make a complex decision based on what I feel like whilst in an overwhelming environment that is going to suppress any sense of what I feel anyway.
Choice – regardless of whether your interoception works in a way that indicates to you what you’d like to eat, choosing from potentially infinite potential meals is almost impossible. “What do you fancy for dinner?” is usually followed by my brain rapidly firing through the following thought processes:
What have we got? – I don’t know.
What should I be asking for? – Is there a correct answer I’m meant to know?
I know, what did I have yesterday? – I’ll ask for that.
And that is why I often eat the same things every day. I also tend to opt for carbohydrate rich, yellow, beige and white foods, and cheese. You know where you are with a white food. No one can hide something inside white food that you will come across unexpectedly. These foods are pretty safe. You know what you’re getting! It’s also easier to imagine what you want from a list of choices if that choice is limited to one colour. Less thinking!
Proprioception – coordinating cutlery whilst sitting up straight in a chair with the sudden smell of hot food wafting up your nostrils takes a lot of concentration! I do nothing intuitively or naturally and I need to constantly check where my body is . This is hard work.
Consciously coordinating chewing, swallowing, breathing and talking requires a great deal of focusing. It is easy to lose track and cough and splutter.
Taste – like many people, my sensory processing works in such a way that I can experience strong aversions to certain tastes whilst not noticing other tastes that some people find repulsive. I enjoyed licking door keys as a child and although I haven’t licked a key in many a year, I am tempted to do so just to get that hit of sour, acidic, metally tang that is both unpleasant and strangely alluring at the same time! My brain tells my body that certain tastes are not just unpleasant – they are dangerous, repulsive and should not be eaten. Fortunately, there aren’t that many tastes like that for me and I tend to prefer bland foods but I’ll enjoy a mild curry or chilli, but I will not go near tastes that ‘shouldn’t’ go together like sweet and sour food. What is more significant to me is…
Texture – the sensation of certain foods in my mouth is so extremely repulsive, I am struggling to write about it candidly whilst thinking of examples! Throw away your logic and consider mine instead for a moment… I like a jacket potato, I like chips, boiled spuds are fine too. Mash is not. They are all potatoes and I’ve had endless “but you like potatoes” type discussions in my life, but no one is going to convince me otherwise that mash is just potato and fine to eat. I will eat occasional mash – for instance on top of a cottage pie that my husband has made. That is because I know exactly what that mash will feel like in my mouth. There will be no surprises. “Just try a little bit” does not help me. Food is not consistent. Different brands of baked beans taste very different to each other, and with my poor interoception and ability to know whether I like something or not, how am I meant to know if someone has poisoned my beans, or if they have gone off, or just swapped them for a different brand? I know they are still beans and I like beans, but they don’t taste the same and that means something is WRONG!
Temperature – I need the temperature to be just right. I’m blonde – maybe its a ‘Goldilocks and the three bears’ thing?! If it is not just right, I won’t eat it.
The key thing to remember is that none of these variables are working in isolation. And that is why I can appear so picky about food. If a café has lots of music playing, and bright lights and smells of meat (which I don’t like) then it is likely that my central nervous system will be really fired up and working out whether I want to run away; freeze; or fight. I may become hyperalert and over-responsive to sensory information and find I can’t tolerate something I usually eat because it tastes different. Or I may shut down inside and be under-responsive and crave something strongly flavoured that registers on my taste buds. If I am stressed about something going on in my life, or it is a big day because of an interview or event, my sensory processing works differently too. This is not a conscious choice on my part but an automatic reaction driven by my atypical neurology.
I think the generation I grew up in was more strict about table manners and finishing what is on your plate and eating what you are given, without question. That helped me in some ways because the very strict rules meant I at least had some structure and predictability around mealtimes. However, the predictability was I’d end up being told off! Every single time. And that has added an additional component to my relationship with food. In the 1970s and 80s, sensory processing wasn’t understood like it is today, and I was viewed as fussy or a picky eater. We understand more about it now and I’ve been able to use both my own upbringing, that recognises the importance of structured mealtimes – and my personal insight, that recognises the challenges and distress of autism to inform how we have brought our son up.
In our house, we don’t make a big deal about food. It is a big enough deal already! We totally appreciate how our son may like something one day but not another day and how his logic for not eating something may not work along the same lines as our logical reason for why he should eat it. A balanced diet is important and we have had weeks and months where we metaphorically pulled our hair out thinking “he cannot just live on that for the rest of his life”! But he hasn’t. Eventually, whatever it was that drove him to need to eat a particular food or avoid a particular food has changed and he has tried something else. Here are some tips that we’ve used over the years:
- Regulate your own emotions and senses before you begin. Then help your family regulate themselves.
- Don’t panic (or at least don’t look like you’re panicking!). If your panic is sensed then stress levels will rise. If stress levels rise, whatever the sensitivity is may increase.
- Choose your battles.
- Keep mealtimes calm and never make any of it a big deal. Most children will not starve themselves to death. Talk to your health visitor or GP when you need to.
- I imagine it is normal to feel powerless or like a failure or neglectful. Don’t compare yourself to other parents who talk about their ‘perfect’ sounding families and child-rearing skills.
- If it works for your family and you are fulfilled and living life how you choose then consider carefully why you would do things differently just to appear ‘normal’.
- Teach rules that are 100% honest and consistent and teach different rules for different scenarios e.g. eating with your fingers is fine at home but not at Nanny’s house because Nanny is old-fashioned and will view it as bad manners.
- Make learning about food a family hobby or interest. Grow some food to eat. Cook together and don’t worry about experimenting as you don’t have to eat it! Bake a cake and mix the ingredients by hand and not a spoon – if you like the sensation. Learn about food groups and a balanced diet.
- If a particular colour of food is preferred then find a balanced diet from that colour.
- Never use food as a reward or a punishment. Ever.
- If certain textures are preferred then find a balanced diet using that texture.
- If cutlery is tricky to use then order food when you are out that doesn’t require cutlery e.g. pizza.
- Choose your battles. It’s worth repeating!
- Choice can be overwhelming and whilst we may think that giving a choice may make it more likely they’ll eat it, it may not. You could be just adding to the overload. We have a weekly menu up on the fridge. This means that meals are predictable with no nasty surprises and there is enough time to process what the meal will be and decide if that’s ok or if we want something else.
- It is perfectly logical to like something in a café but not at home or vice versa. If you are a person who has to analyse and categorise everything to understand it. And you only see the bigger picture by first studying the smaller pictures in intricate detail, then you will notice when things are different or don’t go together.
- Choose your battles.
- Social eating is different to eating on your own or with your family – it can be very overwhelming and you may need to take time before and after to regulate your senses and emotions and those of your family.
- Make your own rules. Who says you have to eat at a table? Or with other people? It can be nice, and it is seen as an important social occasion, but if at first all you can do to ensure your child is fed is to give them what they like, when they like it, where they like it then do so.
- If using cutlery is difficult, risk assess whether they can use alternative cutlery. Maybe this will be specially adapted handles for knives and forks or even extra sharp cutlery that makes cutting easier. (like in the photo).
- Use plate dividers to stop certain foods touching each other or use separate plates.
- Don’t tease or point out things you find odd. Accept people’s preferences. (I need to have my burger arranged in a particular order, I only have a tiny bit of milk on my cereal, vinegar must never touch bread – yes, this is unusual but taking the mickey out of me for it just reminds me I’m different and makes me feel sad for being me)
- Take it step by step. Why is your goal important? If it is about making sure your child is healthy then of course. If it is about conforming to what you think you should be doing as a parent then challenge yourself!
In our home, the aim is not to get our son to eat everything or eat certain things that we know are good for him. We offer simple choices between a couple of things that we know he likes. Whenever we introduce a new food we keep it laid back. Mealtimes may not be the best place to try a new food – keep mealtimes safe and predictable. Try new food as an activity on its own where it is fine to have an extreme reaction – positive or negative! It’s also fine to change your mind or try something at a later date. Our son knows that green leafy vegetables often taste bitter to children and that as he gets older the taste may change – he finds this interesting and is happy to consume spinach as part of a scientific experiment on taste and ageing.
Our family believe that food is an essential part of life. We need nutrition to live healthily. Apart from that we do our own thing!