Will try and keep this brief (but will no doubt fail):
My 8 year old daughter has cause me concern since she was about 15months old. By age 4 her language was severely delayed and disordered. I engaged a private SALT and worked intensively with SALT and saw extremely good results and a lot of language development (including better attention and eye contact). Fast forward to now and school are recognizing anxiety when under pressure, hypersensitive to noise and demanding silence in class (yeah right!) slow progress in literacy and numeracy (poor reading comprehension despite good decoding) poor attention, slow output (despite adequate fine motor skills and extremely neat handwriting but strangely with no spaces between the words) and failure to finish work. She now has an IEP, ear defenders, help with literacy, social skills classes, visual plans. At home we have had severe meltdowns and very difficult/extreme behaviour, phases of constant unhappiness, difficulties with social skills, apears very rude to us and has difficulties with the unwritten social rules around playdates etc. sensory issues (extreme aversion to 'scratchy materials' and never wears socks in the house). She can be very anxious when asked to do homework, and often this is impossible. She can also meltdown at seemingly nothing, losing control, shaking, bloodshot eyes, screaming at the top of her voice, often this seems irrational and happens despite being given clear instructions, choices and consequences. Her language was recently re-assessed by the same SALT and her structural grasp of language was found to be age-appropriate but understanding of non-literal language and conversational skills markedly different on 1st centile. SALT suggested Aspergers. Sick of waiting around for NHS (still waiting for ADOS) I decided to have a private assessment carried out. The assessor did ADOS/ADI-R and observed in school at lunchtime (anxious) and at after school club (repetitve overtures to other children, didn't recognize when others were not interested, just carried on talking and repeated over and over with other children). The outcome of the assessment was that my daughter has 'significant' impairments which affect her in each area of the diagnostic criteria on an 'everyday' level, yet are not severe enough for a diagnosis. He noted her lack of gesture, lack of acknowledgement and interest in him, inconsistent interpretation of non verbal language, mild sensory issues, rituals, inflexible thinking, difficulties with social rules and very literal interpretation of written language. Yet because they are not 'severe' she needs help as per Aspergers kids but does not merit a diagnosis.
I was very impressed with this man but I wish he could have come on holiday with us and seen how many insurmountable difficulties she encountered from hot sand to new environment to suddenly deciding to not take turns at something. She is 8 years old and has just started Y4. We just watched the end of Casualty and there was about to be a car accident so the channel got changed and my daughter complained, saying she liked watching 'the travel news'. Am I right to question this non-diagnosis?
