I’d like to start by introducing Abbie, an incredibly strong, generous, loving, patient, and beautiful person who lights up my life every single day- and most days teaches me a few things about the type of person I should try harder to be. I was once told that Abigail is the Hebrew for “gives joy” and she certainly does.
However, that doesn’t mean her journey has been easy- it hasn’t. I guess that, as her Mum, I knew that something wasn’t quite right from the age of about 6, although I couldn’t put my finger on exactly what. I raised my concerns in school, but think I was really seen as a pushy mum ( I’m also a KS1Teacher which adds a bit of context ) and the advice was to just let her be and she’d develop in her own time.
Looking back there were quirky things that now I see as early signs of ASD but at the time I didn’t make the links.
Abbie was quite a clumsy toddler, always covered in bruises. She insisted on having her shoes fastened extremely tightly, and also her hair HAD to be in one TIGHT pony tail. As she progressed through school, although happy, sociable and within the average range academically, I began to notice her rate of progress decline.
Additionally, I noticed when playing she loved acting out scenarios of my invention, but would want to re-enact them over and over again and over again. She wasn’t really interested in playing with her dolls house or making up imaginary stories or playing with her dolls- she really just wanted me to create a story which she could re-enact. Again and again and again and again…..
Towards the end of Y3 , as her rate of progress declined further, becoming more concerned that she might be dyslexic and worried that her needs might fall through the net in a class of 30, we decided to move her into the independent sector as we thought smaller classes might benefit a quiet little girl who often smiled, nodded but didn’t really understand.
Here is where I really started to notice a social problem- whereas other new girls just got stuck in with the social groups, Abbie would wait on the sidelines until someone actually said – “would you like to join in Abbie?” which she then did with a huge smile on her face- so it clearly was not a case of _ “I don’t want to join in, I prefer my own company” but definitely a case of” I want to join in but I don’t know how”. School described her social skills as poor and it was noted that she used to hang around the adults in the playground rather than interact with the other children.
This reluctance or rather, total lack of confidence or even an understanding of how to socialise became more and more apparent as she moved through KS2. She became more and more of a loner at school and was obviously unhappy. At this point I started to suspect ASD, and had many meetings with SENCOs, classteachers and headteachers, yet as the autism information out there was so boy orientated, my concerns were regarded as being just those of an over anxious mum- I was actually told in one meeting that it was my anxieties that were the root of the problem!
Although deeply frustrating, I can’t hold too much blame on the teachers- there is NO training available to raise awareness of what to look for in recognising ASD in girls, However, looking back I’m appalled and angry at the way my concerns were simply dismissed.
This is why training has got to be given to at least every SENCO in every school. They are the front line and they absolutely do not know what they are looking for.
As Abbie progressed into Senior School she became more socially isolated. I also became aware that her levels of anxiety in school were high and she was often tearful, and exhausted by the time she arrived home. I also noticed that she would regularly re use my language during social chat with me- it was as if she stockpiled phrases she knew were correct to use in certain conversations as she’d heard me say them.
Abbie was finally diagnosed privately at the end of year 8 after school finally agreed with me- that she was showing many autistic traits. We couldn’t wait another 2 years for the LA to put us on a waiting list.
Did a diagnosis help?
The diagnosis hasn’t changed who she is but it has made us much more aware of why she acts in a certain way. It also enables us to plan ahead- recognise potential issues and deal with these first to try and ensure smooth passage.
Abbie still struggles with social interaction, but now we understand why and can support her. We can prepare her for changes to her routine and practice the social skills she finds difficult. She still experiences ignorance at the hands of professionals – mainly teachers who don’t understand autism in girls or the necessity to think ahead, predict the problems and remove the barriers, but slowly we are working together to educate them!
My advice to anyone out there- don’t let so called professionals minimise your concerns – you are a parent and you know your child best- oh yes- and keep a diary !!