I have two boys and the younger one always struggled with attendance at primary school; he was referred for ASD assessment in his Reception Year and although we never achieved a diagnosis, the school always supported him as if he was on the spectrum. In contrast, my older son hardly missed a day of primary school, and apart from the occasional sign of anxiety about a teacher or an event at school and a few odd behaviours, we never thought anything was wrong…until the day he moved to secondary school!
From day one at secondary school, it appeared as if he had some sort of breakdown and he began ‘school refusing’…or rather, he was UNABLE to attend. He was so distressed in school and at home and displayed all the signs of depression and extreme anxiety. We were bemused, embarrassed and upset, but relied on advice from school staff and the GP who said “he will be fine and will get used to it if you just keep bringing him”. He struggled so much though, he began to self-harm and our relationship with him was crumbling…we knew there was more to it than just a few nerves, or general unwillingness to go to school.
We started attending CAMHS appointments and for the first school term I travelled with him on the public bus every day, waiting for him while he went to the few lessons he felt he could manage, and then bringing him home again. The Dr at CAMHS saw us every fortnight and talked through CBT techniques with us, but nothing improved. I kept asking for a full assessment, including the possibility of ASD, but was told it had been ruled out (with no developmental history taken or testing of any sort). As we got near to Christmas the pressure to increase the number of lessons attended grew, but we were no nearer to understanding why he found it so difficult, and no nearer to finding a way to help him cope.
As the new term approached we knew it was going to be even more difficult. I had made contact with other parents on the Yahoo group and had been exploring options and asking for advice. We decided to deregister him from mainstream school and enrolled him at an Internet school so that he could continue his education with as little disruption as possible. This is what he wanted to try and we knew that traditional home education wouldn’t really work for him at this point. We couldn’t really afford the fees for internet school, however, we managed to scrap the money together each month as we didn’t feel like we had any other choice, and it was important to him to feel ‘normal’ in that he was ‘at school’ and learning in the same way as other children.
Our son went on to complete his secondary education at Internet School. After a year at home we went back to CAMHS and then spent the next 5 years trying to convince then that he could be on the Autistic Spectrum and needed a proper assessment. We had some truly awful appointments over the years where we were blamed for being weak parents…I was blamed for working as a childminder…our son was blamed for being lazy, having a bad attitude and having no interest in school…etc. Every time we had a frustrating appointment or follow-up letter I would write back explaining why we disagreed with their conclusions (I bet I gained some good labels as a parent!).
After he successfully completed his IGCSE’s it was time to take stock. CAMHS were still frustratingly disinterested, he never went out, only had a few friends online and was desperately worried about his future. We tried a private hypnotherapist and searched for other help. We found a course at a local college and he enrolled, but found he could not start on the first day as all the same difficulties were still there. He fell into a depressed state after that and we went back to CAMHS and explained the situation. They seemed a little more concerned now, because he wanted to go to college but couldn’t because of his difficulties. More letters detailing all our concerns and a couple of angry outbursts from me led to them agreeing to assess him for ASD (finally, after 5 years of asking!). Eventually the ADOS test indicated ASD, and the Clinical Psychologist actually went through all his notes and records and put together a complete picture of his difficulties and then diagnosed PDD-NOS or Asperger Syndrome. He was given CBT sessions and Sertraline in the lead up to attending a different college course he had found that was perfect for him.
He attended the new college course and got awards for 100% attendance, distinctions in all his modules and graduated with a BTEC in Countryside Management after two years. He also learned to drive and began to volunteer at a nature reserve as part of his course. Now he is currently at University doing a degree in Wildlife Conservation. University was a struggle at the start with the move into student accommodation and meeting lots of new people, but after six months, things are going well and he is determined to finish his degree.