Joe was premature and he was a very frustrated and cross little baby, he didn't really drink his milk, he didn't really sleep, he always wanted to be held or to be in motion. This anger and frustration he displayed carried on way into toddlerhood and my whole family said that he was 'just a boy' and that things would get better ... the health visitor said that he was 'challenging'.
When he attended preschool he was still very angry and frustrated and did not associate with the other children, apart from chasing games. His behaviour was strange - he would hide under the table and scream at home time, it was quite disturbing for all!
At this point we were told by the health visitor that he could be a 'gifted child' because he was way above the others in his academic learning but we could see that his emotional and social skills were way below that of what was expected.
Eventually one very kind key worker at preschool handed me a leaflet 'A is for autism' which did upset me at the time. My opinion of autism was very different then to what it is now and I didn't agree that that was Joe - he was too loving, too verbal, too clever.
Joe was referred to the behaviour team who assessed him for quite a few months and worked with us on his behaviour, the anger and frustration displayed by him. Very quickly, it became blindingly obvious that none of the strategies that they had would work for Joe and the behaviour team were also increasingly frustrated, and it was at this point that he was referred to the paediatrician.
Joe had a referral at age four to paediatrician who did the tests required and agreed that he had lots of traits associated with Asperger syndrome. This was fine for us as we had no desire for any label at this point.
However, when Joe started infant school it became apparent that a label would be needed for a statement as the school could not and would not deal with Joe without this extra money.
On the second appointment he was diagnosed with Asperger syndrome, at just prior to being five.
He had already been excluded around nine times at this point by the mainstream school that he was attending and on the day that we got his statement through he was permanently excluded.
The exclusions were all around his behaviour in the classroom and the fact that he had such severe sensory problems; he could not cope with the demands on him and would react by having meltdowns. His meltdowns were dealt with them very badly by the school and he was manhandled and held ... just everything that increased the meltdowns.
After the final exclusion Joe went to another mainstream school who believed they could help him. They actually managed to get Joe through infant school on a part-time timetable (at some points he was in school for 15 minutes a day) when he went full-time I would get called to come and collect him .... it was never worth me leaving the school gates to be perfectly honest. By the time it was ready for him to go to junior school I had already home-schooled for six months at one point .... and it was then decided that he would be managed better in a specialist school where he is now to this day. It is a wonderful school which specialises in ASD and ADHD and has kept Joe full-time from day one.
Unfortunately, although it shouldn't be unfortunate, Joe’s academic prowess is way above that of his peers in the specialist school that he is in, so he is now about to start integrating back into a mainstream primary for one lesson a week with a view to him joining mainstream education again at secondary school. This is something that terrifies me and I'm trying not to think about it right now.
I don't believe that academic success and his academic education is the most important thing to Joe because I believe that he will succeed in this wherever he is - he is very clever. I think the most important thing for him at school is learning his social skills and maintaining friendships - unfortunately at the specialist school they do not feel that he is able to do this either as there there are no children to meet his academic level therefore he is unable to make a peer friendship group.
The school believe he would be better off trying to make friends in a mainstream setting - I don't feel he is going to be able to do this at all as his emotional and social behaviour is very much different to those of his age. Plus he will never cope with the sensory overload that mainstream secondary school will place on him.
The school believe that they are excluding him at the moment rather than it being inclusion because he's having to be taught away from the other children - his reading age is around 18 years old and he is learning at a level equivalent to the GCSE students whilst he is still in the primary education ( he is ten).
It had a dreadful impact on our family - it nearly destroyed us in all honesty because trying to maintain a healthy balance between work and life is impossible when you are pretty much home-schooling your child not out of choice.
I don't believe that the mainstream teachers received the right training and support to meet Joe’s needs. I don't think that any of them actually understood autism - or if they did they only understood one type of nice quiet autism... they didn't understand that the outbursts and the meltdowns were part of Joe's autism.
It seemed that most of the mainstream teachers still considered this as Joe being naughty and difficult which absolutely broke my heart. It is very hard for me to talk about our time at mainstream school without becoming upset at the memories and I am dreading that we may have to face these issues again in the next year.
To watch Joe in our 'when will we learn?' campaign video, click here.