Alison: My sons' experiences in school

Every parent of a child with autism has a different experience. I have two children with autism, Cian and his younger brother Conor.

Cian was five when he was diagnosed with autism - he was at a mainstream school that wasn’t working out for him. We were really lucky to get him into a local autism-specific school. It was a step forward for Cian and a relief for me to meet other parents who were having similar problems.

Finding out Conor had autism too

I was expecting Conor at the time Cian was diagnosed. I remember saying to one of the mums that it was unlikely that the baby would have autism too. But she told me that both of her sons had autism. I didn’t think too much about it until two years later, which is when Conor stopped speaking. Until then he had been developing completely ‘normally’ and we didn’t have any worries about him.

Conor changed from being a really sociable little boy who said a lot of things. He knew everyone’s names, even the cat’s name. He used to stand at the backdoor and say ‘outside’ and blow kisses to say goodbye. Now you’re lucky if you get a wave.

Conor loses all of his words

By the time he was three he had lost all of his words and was completely away in his own world. Conor was attending a special needs nursery, as the brother of a child with autism, so he was in the best place to be diagnosed and get the support that he needed. Unfortunately this is far from the experience of many families.

Conor’s original diagnosis was a ‘severe learning disability with autistic features’. I wanted Conor to go to Cian’s school and was devastated to be told that he was not able enough to go there. I felt as though I had lost my bright little boy. However, we were really lucky with the primary school that Conor went to, which was for children with severe learning disabilities - and he did make some progress there.

The real problems started when Conor moved up to secondary and changed schools. He started to regress and his behaviour became more and more challenging and unpredictable.

Aggression and injuries

The most upsetting aspect was his self-injuring behaviours – the hand biting and head butting. He used to lie down in the bathroom and just bang his head against the floor. Not even the Clinical Psychologist knew why he was doing it. There was also the aggression – the head butting other people (he once broke my nose) hitting, punching and biting (he also once bit my face).

I was black and blue and the effects of all this was putting huge amounts of stress on the family. It limited our freedom and the amount of time I could spend with Cian. I was considering a residential school for Conor.

Conor goes to TreeHouse

Conor’s dad began researching autism-specific schools to find Conor somewhere he could learn and we were delighted when Conor was accepted at TreeHouse School in 2008, but unfortunately Conor was not able to start until 2010. It would be hard to describe the stress that all this caused, especially as so much time had been wasted. It is such an awful shame that Conor could not have started at TreeHouse School a lot sooner as it would have helped him a lot.

On a happier note – Conor has been at TreeHouse School for one year now and has learnt to communicate using PECs which he uses at home as well as at school. Conor now has the tools to communicate so the self-injury and anger happen much less frequently.

My big concern

My big concern, now that Conor is coming up to 16, is what is next for him. Cian, who is at the more ‘able’ end of the autism spectrum, went to mainstream college and studied drama and social skills. It wasn’t perfect but at least he could see a future for himself. But for Conor, who is less able, and other young people like him, there is a real lack of provision when they reach 19.

I just want the same as all other parents – for my son to continue making progress in a setting that suits him and where staff have the expertise to support him. I know that with the right opportunity and support he can continue to learn and move towards a more independent and fulfilling life.

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