Our DS was diagnosed with AS at the age of almost 7, our experience of it began when DS was born, he barely slept, took over an hour to feed, was startled by the smallest of sounds, if he was laid on his back he would scream and flail about, bathing him was a nightmare because he hated it, the only time he was visibly relaxed Was when I held him upright on my shoulder, he would snuggle his forehead into the curve of my neck and the tension in his tiny body would relax but if I moved or touched him he would start chuntering and the tension was back. At a year old he would repeatedly headbutt the floor, walls, doors, stairs, windows in frustration, usually because of not being able to reach/have something that he wanted.
As a toddler he would scream and cry if other children went anywhere near him, wouldn't touch anything messy, still hated baths, would strip off at every opportunity ( hated clothes and shoes) and his diet became very limited. At 18 months he was extremely verbal (health visitor was convinced he would have an extremely high IQ) but couldn't verbalise his feelings of anger or frustration and that's when the aggressive behaviour began.
In pre school he played alongside other children but not with them, he would do a runner at every opportunity, hairdryers and handriers caused much distress as did flushing toilets, emergency vehicle sirens and lights, shopping trips, restaurants, fireworks, motorbikes, loud music and darkness.
Into full-time education and the aggressive behaviour got worse, punching, kicking, hitting and scratching and then the biting started and he became demand avoidant and he was labeled as a naughty boy who was choosing this course of behaviour, not once did anyone agree that he wasn't coping and a specialist teacher advisor said "at least he doesn't threaten you with a glass bottle or knives or other objects" (I forgave her for that comment) but I told her that he had caused my broken finger, had bitten me so hard that his teeth had left indentations in the bones of my forearm and that his headbutting had caused detached muscles in my other arm, that in fact his behaviour at home was far worse than anything displayed at school, things became even worse and it was only then that someone sat up and took notice and we were started on the path to a diagnosis. 20 months later we had the main diagnosis of AS and less than a year later there was also a diagnosis of Hypermobility, Sensory integration difficulties and anxiety. Infants wouldn't start the statement process because "he is not severe enough, we have children with greater difficulties and we have almost reached the limit of the amount of referrals that we are allowed" and so the problem was passed on to the junior school.
Junior school SENCO refused to apply for statutory assessment but by end of yr 3 they were desperate to get it started and by yr 4 he needed 1-1 support, however the opinion that he was choosing that behaviour prevailed, strategies were dropped after a couple of weeks "because they aren't working" ( a couple of weeks were not long enough for the strategies to become the norm) parts of the statement and recommendations by OT and Physio were ignored particularly the parts about using technology to record his work as writing was a big issue.
A lack of knowledge and understanding was prevalent. Things got still worse at school and at home and at 9 years old my son wished he was dead because he said " I don't know why I'm doing this and I don't know how to stop" he also said " I can't fix it myself, you have to fix it for me"
Then came illegal exclusions and IMO discrimination and victimisation and then isolation and finally it was "don't come back after the holiday, your son is no longer welcome here" so finally we had an admittance that the school were out of their depth and later that year our DS started at an out of area school.
Just within that academic year the aggressive behaviour lessened dramatically and things began improving at home. Each subsequent year has brought new challenges but the behavioural difficulties have continued to lessen, DS trusts his school to fix each problem as it arises and they do, and as a result of this the anxiety and stress is much less and he is coping brilliantly both at school and at home, thanks only to his school for their perseverance and honesty, their strategies and small class sizes and their teaching methods as well as the additional therapies have all helped DS to become who he is today.
Now all we need is for the local authority to do what they are supposed to do.