Today has been an emotional day for me and my husband. Today we have been told that our beautiful 9 year old daughter has aspergers syndrome. I am not surprised that she is. You see, ever since she was a baby there have been odd things here and there which didn’t really concern us too much at the time as she appeared to be meeting her milestones. It was as she moved on into school that our concerns started to mount: the social difficulties, sensory issues, learning difficulties and her extreme shyness. So, just as I had done with my son a few years earlier, I expressed my concerns to her school who a year ago placed her on school action plus and sought advice from our local education department. Subsequent assessments showed low auditory and visual processing difficulties, so low that they thought she had a hearing problem. However, hearing tests proved her hearing was within normal limits. Next came a speech and language assessment which revealed a lack of expression and difficulties in verbalising her thoughts.
And that would have been as far as the school would have gone if I hadn’t, once again, pushed for further assessment. But ‘push’ I had to. The school that had so failed my son a few years earlier were once again refusing to acknowledge my other concerns about my daughter - the social difficulties, the unusual responses to noise and crowds, rigidity, anxiety, her literalness etc. So at a recent meeting when I read out from my list of worries, well aware that I was describing an autistic disorder, the SENCO (Special Educational Needs Co-ordinator) and the specialist teacher just turned on me and told me that my daughter’s behaviour was learned behaviour from her elder autistic brother and that I was an over-anxious mum. I was no longer prepared to tolerate such unprofessional comments and I retorted that no parent would want to be sitting where I was then, talking about my special needs child and seeking support. They went quiet and after a while they reluctantly agreed to our application for an assessment for an autistic spectrum disorder but you could tell that they didn’t see the point in doing this. They made me feel like a time waster.
Well the assessment did happen. It happened this morning; my daughter in one room undergoing various tests and me and my husband in another exploring her developmental history. This afternoon we returned and were told about her aspergers syndrome. They also expressed concern about her low mood and have referred us to CAMHS (Child and Adolescent Mental Health Services) for a check-up. This worries me a lot. At the same time discussion centred upon her education and how unlikely it would be that my council would give her a statement as her academic ability is apparently not low enough. At the moment I am more upset about this than her diagnosis for I suppose I have got used to living with autism in my family through my son and I could see the triad of impairments in my own daughter, albeit differently. Today was a confirmation of that. Her diagnosis does not give me a sense of relief as I experienced when my son was diagnosed three years ago but a feeling of very deep worry for her because I have seen just how unsupportive our British education system is for children like my daughter. What disturbs me most though is the attitude of my council who do not act for children like mine until they end up in crisis, either out of school or suffering from mental health problems. Is it right that in the 21st century our education system exposes our children to greater emotional and mental harm just for the sake of saving some money?
It looks like I have another fight, this time for my beautiful aspergers girl.