When we got Katie’s report following her autism assessment it included a list of reading materials to help us and Katie understand autism better. One of the books was “I’m An Aspie Girl” which is aimed at girls aged 5-11 ish (Katie was 8 at the time). The terminology is outdated as it refers to Asperger’s, which isn’t officially diagnosed anymore and is also a term that most of the autistic community reject, so in all honesty if I was given the list now I wouldn’t read that book. However, this was about 18 months ago and I wasn’t aware of the issues with the terminology then so we did read it. The book is written from the point of view of a girl called Lizzie who describes how she feels about certain situations as an autistic girl, what she’s good at, and what she finds difficult. I read a number of reviews all raving about how great this book was, and I bought it.*
I read it with Katie one evening, not necessarily with the aim of explaining to her about her diagnosis, but more just to start bringing autism in to conversation. She was tired and had a headache but had asked for a book so when I started reading she was lying on her bed half paying attention.
Within a few pages her ears had pricked up and she sat up and started following the book with me. Within about 6 pages she piped up and said “Mummy I think I might be an Aspie girl!” With each page she became more and more engaged and started talking about things without me needing to prompt or ask questions – telling me the smells that bothered her, the friends that she found it especially difficult to share, the difficulties she had in getting her ideas across to others at play time, how she didn’t like being in groups. Some of this I knew anyway but because of my own observations of her rather than because she’d talked to me about it. Some of it was a complete surprise – I’d never even known she was sensitive to any smells but she told me the reason she didn’t like it when I changed my car was because she hated the smell of my new car and about how certain people’s houses smelled funny to her but that no one else noticed anything.
And over and over again after each page “Mummy that’s like me”, “I do that too!” in an excited voice, and at the end of the book “Am I an Aspie girl?”
I asked her how she would feel if she was. She told me that she liked Lizzie and that would be OK.
“Yes sweetheart you are.”
A smile from Katie and a request to read the book again. So we did. And again on each page she stopped and talked about the ways that she was the same as Lizzie. She asked me if there were other autistic people at school so I said yes there would be. Katie is left handed so I explained to her that in the same way that a few others in the school are left handed but most of them are right handed, there would be other kids at school who were autistic and whose brains work in the same way as hers, but most of them work differently.
She hugged the book and asked me if she could keep it. She went to bed that night without getting up again and saying she was scared, without panicking that she was going to be sick, and she slept all night (which was probably the last time she did that – her sleep generally is pretty rubbish!)
As a family who knew next to nothing about autism it seemed at the time that this exploration into understanding more and explaining things to Katie had gone pretty well. However, from Katie’s point of view her initial positive reaction very quickly turned negative. She had started to experience a lot of issues at school and was becoming more and more aware that she struggled in ways that others didn’t. She was often very upset and described herself as weird and stupid. She realises she is different from most other people her age but she doesn’t want to be and her self esteem is pretty low. To her mind autism has not been something to embrace, autism is the root of all her problems and something to blame.
One of her constant questions has been where are the other people like her? I told her there were other autistic people and other autistic children but couldn’t put my money where my mouth was and show her that she wasn’t alone because we didn’t know any other autistic people (or thought we didn’t!)
That has changed a lot over the last 18 months. We found a local charity that runs a youth group for autistic children, and Katie now goes to that each week. She enjoys it and has made a really good friend through going there. It’s the kind of relationship Katie really thrives on. She and this other girl are completely in each other’s pockets and have formed an intense relationship which is equally balanced on both sides – which is great for Katie because there have been other times when she’s been very invested in a friendship but the other person understandably wants other friends as well and doesn’t want to be exclusively with her.
Katie has also made two friends at her new school. Although it’s a mainstream school there is quite a high proportion of SEN kids there as other parents are attracted to it for the same reason as us – it’s small and quiet, the staff can really get to know the students, and it’s generally a more suitable environment than a mainstream school that’s 10 times the size. Of her two new friends one is autistic and one has huge anxiety and is on the pathway for an autism assessment. It’s been huge for Katie’s confidence to be at a school where she doesn’t feel like the only ‘different’ one. Her old school has 400+ kids in it but (this is just my experience anecdotally) only really seemed to offer support for the ones who were falling behind academically, not the ones who were struggling emotionally or because of sensory issues. I have come across numerous parents who were in the same boat as us and ended up moving their children to different schools because they were just not being supported or accommodated in any way. The lack of support was an issue in many ways, including the fact that it reinforced Katie’s feeling that she was the only ‘weird’ one. In comparison at her new school she sees other kids having alternative arrangements made for them, going to quiet spaces, having movement breaks, using noise cancelling headphones etc, and she now feels that it’s OK for her to do those things too. She used to be embarrassed to be autistic and was adamant that she didn’t want anyone to know, but she has voluntarily told her new friends and found that she’s not the odd one out because they are (or possibly are) autistic as well.
Katie and my niece have had a special relationship ever since they met. My niece Cara is 9 months older than Katie and we didn’t see much of them when the girls were little because my sister lived in America, but whenever we did see them the girls were always so excited to see each other. They have been back in the UK for the last 7 or 8 years and live 10 minutes down the road from us (yay) and I am SO pleased our kids are all growing up together. Katie and Cara have always been happy in each other’s company although in a lot of ways they’re quite opposite to each other. Katie can really be quite intolerant of kids her own age and gets annoyed with them quite quickly, but I’ve literally never heard her say a cross word about Cara. Well Cara has been on her own journey and has recently been diagnosed as ADHD and autistic, as has my nephew (my brother’s son) who we don’t see nearly as often but is someone who again Katie has always got on really well with.
I think it’s been quite a revelation to Katie that she’s not alone, especially given that her two favourite people (Cara and Poppy her friend from youth group) are also autistic. Her definition of weird has become much more positive and she set up a messenger group for the 3 of them called The Weird Girls Group. I think her relationships with the small group of friends she has have become a lot easier because they are all neurodivergent. It’s not at all to say that she can only be friends with other autistic people and not neurotypical people but whether she realises it or not she seems to be more naturally drawn to people who aren’t neurotypical now that she’s in environments where she’s got that option. Which I guess is the same for neurotypical people but it’s a lot easier for us because we’re always the majority.
I hope it’s a springboard for Katie to feel more positive about herself, calmer and more settled with her friendships, and know that she is not alone.
*For anyone reading this who might be needing to have conversations about autism with their children or who is looking to get more understanding, I wouldn’t recommend “I’m An Aspie Girl” because of the issues with the terminology it uses and I’ve only referenced it here because of our experience at the time. There is a great video which has recently been released which I can’t share because it says playback on other websites has been disabled by the video owner, but please go to YouTube and search for “Autism acceptance 2022 The Neuro Bears”.