I’m sure it’s nothing, but….

This really isn’t intended to be a blog about autism or about me being an ‘autism mum’ – because I’m not autistic and I’m Katie’s mum not an autism mum. I also have a long way to go in learning more about autism and supporting Katie. This is literally just to document some of the key times of my life as a mum, but right now a lot of my time is taken up with navigating Katie’s relatively recent diagnosis (October 2020). She has found the last couple of years at school incredibly difficult to cope with and we have found it unbelievably hard firstly to even get a diagnosis, and secondly to get Katie support or to know which organisations we can turn to for advice. School, CAMHS, the Emotional Health Academy, the GP, are all services we have turned to and not really made any progress with. The GP was helpful but all roads seem to lead to CAMHS so she referred us there and they have done….nothing.

Mostly at the moment it feels as though we’re stumbling around in the dark and spending a lot of time sending emails, making phone calls, having the same conversations on loop and not much changes. The sources that have been the most help haven’t been the ‘official’ ones, but groups I’ve joined on facebook or practitioners I’ve started following on social media.  

I’ve been writing a fair bit recently just to try and get my own thoughts in order. One question I’ve asked a lot is why didn’t we pick up on Katie’s autism earlier? If we had understood earlier could we have been better parents than we have been up to this point? Would she be in a better place? So I thought back about Katie as a baby, at preschool and starting school and ended up writing some of the background down to how we came about eventually realising that she ought to be assessed for autism.

My worries about Katie didn’t start until she was 4 and went to primary school. As a baby she was the most content out of my three. She was so easy to read (fingers in mouth and curling her hair round, must be time for a nap!) and I felt very connected and in tune with her. She sat early and walked late so we would sit and play together, visit family and see other baby and mum friends where I would watch the other mums chase after their little ones while Katie gave me an easy life and sat on the floor going nowhere. She had my undivided attention for her first 2 years until we had Alice, and it was pretty much a birds singing, sun shining, parenthood is the best thing ever 2 years. I don’t think I’m looking back through rose tinted glasses either, as we’d always thought we’d have another baby after Katie but it did cross my mind that I was having such a great time with her that it wouldn’t matter if she was the only one.

Then she moved on to preschool and loved it. She thought her key worker was the best person ever and she found herself a best friend who she talked about non stop. She didn’t seem particularly interested in anyone else and occasionally I worried that she hadn’t seemed to make any other friends, but she was having such a good time and her friendship with Rose was based on mutual adoration so I just patted myself on the back that we’d chosen a good preschool and that she was happy.

Come primary school I was excited and optimistic for Katie to have the same amazing time that she’d had at preschool, and I was probably a bit naïve and a bit smug by this point. Rose wasn’t going to the same school but we had talked to Katie about how they could still have playdates and how she would make new friends at school. Off she went perfectly happily and continued to do so each day. Parents evenings and chats with teachers suggested she had settled down well and although she was a summer baby and had only recently turned 4 when she started school she was keeping up just fine.

And yet….

From very early on at primary school I’ve worried. She didn’t find another Rose and seemed to find it very difficult to settle down and make friends. Not in an obvious “I don’t want to go to school, no one likes me” way, she’s never been bullied and as far as I can tell the other kids like her well enough. But she never seemed to have any particular friendships and would never tell me anything about her school day. If I did finally manage to coax any information out of her it would be something about one of her lessons or what she ate for lunch, never about who she had spoken to or played with. She only occasionally got invited on playdates or to birthday parties. If I did ever ask her specifically who she’d played with or eaten lunch with (and I didn’t very often as I didn’t want to turn it into a big deal or let her know I was worrying) she often said she was by herself. If I asked her who she liked or who she wanted to play with the response was usually “I don’t really like anyone in my year.” It’s a year group of 60.

At school parents evenings the first question I’d always ask her teachers was how she was doing socially. Every time they’d look slightly taken aback like this was an odd question, and follow it with a slightly vague “oh yes, she’s fine.” After her first year of not really seeming to like the other kids that much, we moved into year 1 where she latched on to a girl called Abbie and all we heard about was Abbie this and Abbie that. When another girl in their year moved to a new area and left school Abbie cried because she would miss her. Katie was overjoyed because it meant one less person to share Abbie with. I was very conscious that this was not the same mutually adoring friendship that she had had with Rose – Abbie seemed like a very sociable girl who was happy enough to spend time with Katie but was also popular with the other kids and wanted to play with them too. I worried that this was not a healthy relationship on Katie’s part. But on we went into year 2, and actually this was the one year of school where I felt Katie had finally found her feet. Her and Abbie gradually drifted apart with no great drama and she made 3 new friends Molly, Emma and Phoebe. She started being invited to their houses and birthdays and seemed finally settled. Never going to be the social butterfly of the class, but a happy girl with a small group of friends. What more could I ask? She got a lovely report from her year 2 teacher, got put in the same class as her three new friends for the next school year, and so I was feeling really optimistic about year 3.

Year 3 hit us like a tonne of bricks and Katie massively struggled to cope with the transition from infants to juniors. This didn’t entail a move to a new school, but as a junior she was in a new block at her school and in a new playground which held all the kids from year 3 to year 6. She didn’t like being surrounded by all the bigger kids and found the whole area intimidating, often spending the whole lunch break eating really slowly so she didn’t have to go outside, or taking herself off to the quiet room. Bedtimes took all evening as she was up crying and worrying about things she couldn’t or wouldn’t articulate. Everything manifested itself as a tummy ache and a fear of being sick. It wasn’t unusual for her to be up until past 10.00 when her bedtime was supposed to be 7.30/8. She stopped eating. My toddler who used to joyously shove any food she was given down her throat with appreciative ‘mmmm’ noises now stared at a plate of food with no interest. She wouldn’t eat breakfast. She brought her packed lunch home from school each day with literally one bite taken out of a sandwich and everything else untouched. She would sit at the table at dinner chewing endlessly on one mouthful before finally swallowing. And I mean endlessly. She could sit and chew on one mouthful for half an hour at a time.

After spending the last three years worrying on an off about Katie but never quite being able to put my finger on anything and reassuring myself I was just being silly, I went in to school to speak to her teachers and voice my concerns. Although they listened I very much got the feeling that I was viewed as just another stressed mum who didn’t know how to deal with her own child – which was true I suppose. “Don’t worry, lots of children find it a big leap from year 2 to year 3.” “We’ll keep an eye on her but I’m sure she’ll settle down in a couple of weeks.” “We understand what you’re saying but we wouldn’t have flagged any concerns to you.” In the end they said they could put her on the waiting list for ELSA support – “but the waiting list is quite long so it’s not likely anything will happen until next term.”

Given that we were now faced with a non-sleeping non-eating 7 year old I didn’t want to wait weeks until the next term. I came across a lady who was local to us who offered sessions to help children understand different emotions and ways to regulate and manage them. It was available for up to 6 children at a time but as it happened Katie and I were the only ones booked in at that particular time, so Katie had 6 one-to-one sessions lasting two hours each. She benefited hugely from them as they allowed her to relax, use craft (which she loves anyway) to explore emotions and increase confidence and self esteem, and learn some breathing exercises to help her feel calmer. She looked forward to every session and we were able to take what we had learned and apply it in every day life, which definitely helped with the eating and sleeping issues. After Katie had completed the course the lady who ran it, Amanda, asked to come round for a coffee and a catch up, at which point she said that she was sure it would have crossed my mind already but she believed that Katie was autistic and strongly recommended that we get her assessed.

That was a bit of a shock. Yes I was worried about Katie, yes I had got to the point where I felt we/she needed outside help, no it hadn’t crossed my mind for a second that she might be autistic. I didn’t really know anything about autism and thought at that point that autistic kids were often non verbal and spent their time relentlessly lining things up or showing off the scale mathematical abilities…which sounds pretty ignorant now. Katie really enjoyed the sessions we’d had with Amanda and had been chatty and co-operative at each one, so Amanda had only ever seen her at her best and I wasn’t sure what she’d picked up on that would make her suggest autism. She said Katie’s need to be in control was the red flag to her. She also explained that girls are generally much better at masking their autism than boys, so often don’t get noticed or diagnosed in primary school but then struggle with the added pressures at secondary school because they haven’t been given coping mechanisms at a younger age.

I probably should have known better than to jump on google that evening when the kids were in bed and start reading about autistic girls as it made fairly bleak reading. I learned that autism was often linked to anxiety, depression, and difficulty in maintaining jobs and relationships. The life expectancy for autistic people is 20-30 years less than neurotypical people due to the high suicide rate. I didn’t want this for Katie but at the same time I couldn’t escape the fact that she was definitely finding life harder than a 7 year old should. It’s a bit of a cliché but it was true to say that although she had times where she seemed at ease and carefree and would goof around and be herself, for the most part I felt she was surviving rather than thriving.

It was also quite a relief to hear Amanda talking about her observations of Katie. I’d spent so long worrying but not quite being able to put my finger on why, or telling myself it was just a phase, or that Katie was just a bit more highly strung and sensitive than Alice and Matthew, that it made a difference to suddenly feel validated – no I wasn’t worrying about nothing and yes this was something that should be investigated further. I’d also started to really doubt myself as a mum as I couldn’t avoid the fact that I saw Katie at her most difficult and the thoughts were creeping in that maybe this was down to me not supporting her properly or not being good enough. I felt very grateful for Amanda’s comment “no, it’s because you know her better than anyone else. Trust your instincts.” Actually, the reason I saw a different side to her was because she really struggles in an unstructured environment where she’s not getting one to one attention, i.e. the times when it’s just me and the kids after school or on Saturdays. I was also usually the one with her when she came home from school or the childminder’s – both environments that she didn’t like. I am her constant and her safe point and I am the one she’s going to let out all that stress to.

Other people saw her in a different light, even close family. When we were with grandparents there would be enough adults there that Katie could ask one of them to read her a story or play with her and she would have someone’s full attention. When we were at my sister’s she would disappear off happily with her cousin and they would play one to one. On Sundays when John didn’t work and we were all together as a family, more often than not one of us would end up doing something with Katie and one of us would be with the other two. These were all times when she could cope better.

I had no idea how to get an ASD assessment but learned that the process was to get a referral for CAMHS which could come from school or the GP. As I had already voiced my concerns to school and more or less been told not to worry, I booked an appointment with the GP. And so began the process of trying to get a foot in the door of Child and Adolescent Mental Health Service….

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