In the last year or so Katie’s sensory sensitivities have really come to the fore. When she was younger I don’t think they were very noticeable. I’m not sure if that’s just because we weren’t looking, or if she was masking, or if she used to be able to cope with them more easily when she was younger and life was ‘simpler’ in terms of the number of demands and social interactions she had to deal with in addition to sensory issues. These days she is a lot quicker to get angry about things and she has meltdowns, which started around the age of 6. I used to wonder why she’d never thrown tantrums as a toddler when it was understandable or expected, but did at an age she should ‘know better’.
I understand now that there is a vast difference between tantrums and meltdowns. A tantrum tends to have an end goal in sight and when that’s achieved the tantrum will generally end. A meltdown is involuntary and is a reaction autistic people may have to extreme stress such as sensory overload, changes in routine and inability to communicate effectively. They happen in adults as well as children. They are physically and mentally draining and recovery time is often needed afterwards.
Katie has been amazing and is growing much more self aware in trying to identify her triggers and communicate them to us so that we can work together to try and reduce them. They may change over time, and there are probably some we haven’t found yet. I am also getting much more aware in terms of watching her, keeping an eye on her body language, and trying to notice when things are bothering her and what’s bothering her so that it’s not always down to her to tell me.
Noise – sounds, tone, processing
Katie doesn’t like noise but I find it hard to know what she means by that sometimes as it’s not just related to volume. It’s more when there are a lot of sounds at once or a lot of background noise. She’s never mentioned that noise hurt her ears but she does say it gives her a headache and makes it hard to concentrate. When she uses her fiddle toys at school it’s nearly always because she’s finding things too noisy and is trying to focus herself. She also has very good hearing and is often scared by noises that me or John just can’t hear, which makes it really difficult to reassure her. At night she sleeps with white noise but it still doesn’t block all the other sounds out. We’ve talked about ear defenders or noise cancelling headphones but she is a bit reluctant to try these for now because she doesn’t want to look different, especially at school.
She is also massively sensitive to tone and at home if me or John are getting a bit frustrated she will tell us to stop shouting at her when we haven’t raised our voices. She says most of the teachers at school are horrible and yell at her all the time – I assume this isn’t always the case but any note of irritation in someone’s voice will be perceived by Katie as shouting. We have asked school to be mindful of this and really consider the way they say things to her and the volume they use. Obviously there are also times when they are genuinely shouting, either to get the class’s attention or to tell people off, and Katie finds that very difficult to deal with.
Katie’s processing of sounds is an interesting one too. We’ve had so many times when she’s been scared because she’s heard a noise, and we’ve told her it’s the hot water going through the pipes, or it’s the cat running around downstairs, or whatever it is, and we might as well be talking a foreign language. It just doesn’t register with her and she’s still just as scared as if we’d told her someone is trying to break into the house. We’ve recently come to realise that she needs to process the sound visually as well – she can’t just be told what’s causing it, she needs to see what’s causing it. She explained this to us really well when she was telling us about the singing group she’s part of. She is in the juniors and they are at the front of the group with the seniors behind them. When it’s not their turn to sing they are expected to face the front and not turn round because sometimes they are recorded and their teacher wants them looking tidy and professional. Katie really struggles not to turn round because she said that although she knows the sound behind her is the seniors singing, it still bothers her unless she turns round and sees it’s them. Now we know this we have spoken to her teacher and she isn’t asked to stay facing the front any more, but it’s things like this that it’s so important for us to know and learn about. It’s small accommodations like this that take no effort but make her day to day life so much less stressful. The fewer triggers there are the less likely she is to feel so stressed, and the less likely she is to experience a meltdown.
Last night Alice came out of her bedroom to go to the toilet and her door creaked. Katie freaked out because to her it sounded like a really loud angry bee buzzing. It wasn’t enough for me to tell her it was Alice’s door creaking and that there was no bee inside. She had to go to Alice’s door and see it move and hear it creak at the same time before she felt reassured.
I know a lot of people are sensitive to clothes labels, and Katie is one of them. This is one of the things that seems to have developed as she’s got older – when she was smaller I could dress her in anything and she never complained. More recently though she has started refusing to wear tights because she said they feel like someone is sticking pins into her legs. I asked her if they had always felt like that or if it was a recent thing, and she said they have always felt like that. It really bothered me because she had worn tights to school most days for 4 years before she started objecting to it. I asked her why she had never said anything before and she said she just thought she had to wear them. Also for her that feeling is ‘normal’ because she’s never known any different, but what a horrible thought that we were unknowingly getting her dressed in clothes that were causing such discomfort because we didn’t know any better and she thought she had no choice. She also has some clothes she won’t wear anymore because the label is in the wrong place (she prefers them at the side not at the back) or doesn’t sit right, and she won’t wear leggings that are too clingy / tight.
Katie’s pain threshold is all over the place and definitely not what you would expect. Since she was tiny she has always had a huge reaction to falling over or bumping herself. She will trip over and cry as though she’s broken her leg but there’s not a mark on her. If she trips and we’re holding her hand and grab on harder as you do instinctively, she won’t be relieved that she didn’t fall over, she will cry because her hand hurts. She is intimidated by the playground at school because she hates other kids bumping in to her. She can’t really tell the difference between someone knocking into her while they’re running by and someone giving her a shove on purpose. In a way it’s irrelevant because both situations hurt her, but it means she often interprets the other kids’ actions as unkind whether they are or not. Her reaction to pain has also earned her a bit of a reputation as a drama queen. It’s really difficult for her because she’s often hearing “that didn’t hurt” “what are you making a fuss about now” “that hardly touched you”. It’s true the things that hurt her wouldn’t bother a lot of other people but that doesn’t mean she’s exaggerating or that her pain isn’t real.
She hates having her hair brushed because it hurts (beyond the usual complaint that having knots brushed out isn’t nice). She’s always complained that having her toenails cut hurts, but not her fingernails. Before I knew better I used to try and rationalize with her that one couldn’t hurt and not the other, and that actually it doesn’t hurt to have nails cut unless you slip and clip the skin. These days I listen and if she says something hurts it hurts so we either don’t do it or we try and think of a way around it.
On the flip side, last year she had appendicitis and she made so little fuss about it that we nearly missed it and by the time she went into surgery her appendix was gangrenous and had ruptured. All she told us was that she had tummy ache, and she says that multiple times every day so it wasn’t a cause for concern to start off with. Mostly she has tummy ache caused by constant anxiety, and her complaints about it when she had appendicitis were no stronger than her complaints any other day. Also she had been sick in the night so I just thought she had a tummy bug. I didn’t think it was anything more serious until she brought up a bucket full of green bile that stank a hundred times worse than normal sick! And even then when I took her to A&E the doctors weren’t sure if she had appendicitis and wanted to monitor her until the next day because although it was a possibility they thought she would be in more pain – but then they got the results of her blood test back and rushed her straight into surgery! She was an absolute trooper with the stuff you’d expect kids to complain about and she got through the surgery, blood tests, having a cannula put in, and having the drain pulled out of her stomach afterwards with barely a peep. But try and get her to take her painkillers and antibiotics and she kicked off big time. It’s like she’s in reverse – she doesn’t seem to register pain that would really bother most people, but is extra sensitive to things most people would just find slightly uncomfortable.
Not too long ago Katie was deliberately hurting herself. She was scratching her legs as hard as she could, biting herself, digging her nails in to her skin, hitting herself and pulling her hair. She did it hard enough to leave marks and bruises and break the skin. This was definitely in part because of emotional distress and came with a lot of negative self talk about being useless and stupid, hating herself, and deserving to feel pain. I’m not sure if it was also part of her desire for deep pressure tactile input and a way to calm herself down. Either way she has stopped doing it for now.
Katie’s body temperature is different from most people and she doesn’t seem to feel the cold. Her school told me off for letting her wear socks when it was snowing and said she should be wearing tights or leggings – I explained that she doesn’t feel the cold and also finds tights and leggings too uncomfortable, and they still told her she had to wear leggings. I told her she didn’t have to and I would take it up with school if they got cross about it but she went in wearing leggings – and got too hot and bothered and had to take them off. She often doesn’t wear a coat and it’s not unusual for her to be walking back from school in a T-shirt in the middle of winter. I shiver just looking at her as she won’t wear pyjamas either so goes to bed in just her knickers with a tiny thin bed cover which half the time she ends up throwing off. She likes pressure so we’ve tried a weighted blanket for when she’s feeling stressed, and she likes it but she can’t keep it on longer than about 5 minutes because it makes her too hot.
I guess eye contact is a ‘classic’ sign of autism and Katie certainly finds making eye contact difficult. Again she’s developed pretty good masking strategies and unless you’re really watching her you wouldn’t notice how uncomfortable it makes her. Instead of making eye contact she will look at someone’s forehead or just to the side of them. The only time it’s really obvious is if someone is specifically telling her to look at them because she just can’t do it. I remember watching her in a swimming lesson once and her teacher was trying to explain something to her and kept saying ‘Katie look at me’ and Katie was too far gone to even pretend at that point, she was turning her head well away from her and looking at the wall instead.
At school she finds it very hard to have too much input, so if she is listening to the teacher she tends to be looking at the floor or have her head in her hands rather than looking up at the board. This has got her in to a fair amount of trouble in the past and she has come home upset because she’s been told off for not concentrating because she’s not looking where the teachers think she should be looking. It’s been really frustrating how slow her school have been to understand this. I’ve had to literally spell it out to them – you can have her looking at the board and you’ll think she’s listening but she won’t have a clue what you’re saying because she’ll just be trying not to flip out, or you can let her look down and she’ll actually hear you and take in what you’re saying.
Katie’s balance is also quite off kilter. She’s always been incredibly cautious and was very still as a baby. I could easily leave her on a sofa safe in the knowledge that she wouldn’t roll or crawl off it – if I put her down and went off for 5 minutes she’d be in exactly the same place when I came back. She was late to walk (16 months, so late but not cause for concern) and never did the half running / half drunk falling over style walk that most babies do in the beginning. She was always slow and steady, one foot in front of the other, a very solid plod. She very rarely fell over. She would be on one of those tiny kiddy slides that are barely off the floor, with her feet already practically touching the bottom, and would sit there for ages trying to summon up the courage to slide down. So many adults want to pick kids up and throw them in the air or dangle them upside down, and Katie hated it. She would see other kids enjoying it and laughing their heads off and would want to do it too but as soon as she was lifted up she’d freeze and go stiff.
She’s always had difficulty going backwards e.g. to get her hair wet in the bath. I usually still tip water over her head for her or she has a shower. In her swimming lessons she is slow to progress through the classes because she can do everything she’s asked on her front – she can float, swim, go underwater etc – but she can’t do it on her back. There’s something about that motion she just really struggles with. It looks like she’s not trying because she barely moves from upright, but she really is trying hard. She also finds escalators difficult, especially going down. She can’t just walk on to them, she has to stop and gear herself up for it.
Eating and drinking
Food is becoming more of a sensory issue as she gets older. As a baby weaning her was great fun – she ate anything that was put in front of her with lots of enthusiastic yum yum noises, and she carried on eating anything and everything until she was 7. Then seemingly out the blue (although presumably something happened that we never got to the bottom of) she just stopped eating for about a month. She would have a bite of a sandwich each day and that was about it. Once she started eating again (and as with when she stopped, I don’t know why she started again) she was much more particular about what she would and wouldn’t eat. Fruit is now pretty much a no go. She will eat dried mango and sometimes raspberries or apple but nothing else. She stopped eating chunks of meat, so if we have a roast dinner she won’t eat her meat anymore and she picks the chicken out if we have a stir fry or something along those lines. She is much more sensitive to the colour and texture of food than she used to be. She can also be obsessive about sell by dates so if she thinks something is too close to its best before or use by date she won’t eat it. Again, she has to see – if we just tell her something is in date that’s not enough, she will want to go and look on the packet and see for herself.
These days Katie prefers to eat by herself. She sometimes eats breakfast at the table with us, and usually on a Sunday she eats with us, but it’s her choice so she eats with us when she’s comfortable to do that and not when she isn’t. Most dinner times she will shut herself in the conservatory and eat by herself. She doesn’t want to sit and make conversation round the table, and I assume she’s less willing to do this at dinner because she’s had enough of socializing and being around people at school. She doesn’t like listening to chewing, breathing, knives and forks scraping etc.
Katie isn’t very in touch with her body. She doesn’t drink anywhere near enough and needs constant reminding. When I say reminding I mean putting a cup literally in her hand and asking her to drink something while you watch her do it, otherwise she will put it straight back down and forget. She also has a bladder of steel and can go pretty much all day without a wee. I’m not sure how effectively she can tell whether she’s hungry or not either. When she was little everyone used to comment on her appetite because she would just eat and eat without stopping. She never seemed full, but she didn’t used to ask for food very often either. It was more a case of if it was there she would just keep eating it. These days she is more likely to comment that she’s full, but often it’s because she’s eaten so much she feels completely stuffed rather than she’s just had enough.
I know most people have some sensory issues to some degree and I guess that’s partly where the phrase “we’re all somewhere on the spectrum” comes from, but I don’t think that phrase is accurate and it undermines the experience of autistic people. I will occasionally find a label in my clothes a bit scratchy, and I feel irritated if there is too much background noise or too many people talking at once and I can’t hear properly. But it doesn’t affect me on a daily basis and I’m not constantly challenged just to keep on an even keel and avoid getting overwhelmed. I don’t experience pain or discomfort every day and I’m not living in a world that isn’t designed with me in mind. I don’t understand most of Katie’s sensory issues and they mostly wouldn’t even occur to me if I wasn’t watching her or she wasn’t telling me about them.
I would really like for her to have an assessment and/or some sessions with an occupational therapist because at the moment we’re just taking a guess at the things we can do to help. We don’t have knowledge of proven strategies. One thing we have found is that when she’s upset pressure helps calm her down, which is why she has a weighted blanket but as mentioned it can be limited in its usefulness because she gets too hot really quickly. She also has a sensory sheet which she sometimes uses to ‘fight with’ – she will get underneath it and push it and stretch it out as much as possible. Sometimes she’ll ask me to put her swimming hat on for her because she likes the pressure round her head. Other times she’ll ask me to squeeze her wrists or she’ll push her feet against me as hard as she can. Sometimes it helps, sometimes it doesn’t. I’m also sure there are other sensory triggers that we haven’t identified yet that maybe an OT would pick up on since they know what they’re looking for. We’ve been told in our area that children can access OT if they have an EHCP (Katie doesn’t) or through a GP referral. Our GP put in a referral to CAMHS and they closed the case and said Katie didn’t meet their criteria. Our other option is to pay for sessions privately, which I guess we will need to do. In the meantime it’s a case of listening, learning and adapting.