Family Story – Living with Autistic Spectrum Condition

Noticing the first signs

To begin with I didn’t notice anything to be honest. He was an only child so I had nothing to compare him to. I suppose I thought he was a bit different but I just put it down to eccentricities. It wasn’t until he started nursery that people started to notice things. They would ask questions like “Is his hearing ok? He doesn’t seem to listen?” We noticed that he liked to play on his own and he would line things up, but he was also very clingy. I could never leave him with a babysitter; he would just scream and scream and wouldn’t stop. There was this real contradiction in his behaviour. In fact when he was younger I was convinced he just didn’t like me. I think the biggest change was when he started in reception, within a week the school were telling me that his behaviour was so out of control they couldn’t cope with him for more than a couple of hours a day. In the end they insisted that he got a statement of special educational needs otherwise they wouldn’t keep him in school.

Referral to community health services

We were referred to the Paediatrician through the school but it took a while to get a diagnosis. Whilst this was going on the school were really struggling with my son and were threatening to kick him out. In the end the Paediatrician recognised that I needed support so made a referral for myself and my son for therapy at Child and Adolescent Mental Health services (CAMHS). Although it ended up being just myself in the sessions as my son couldn’t cope with it. This was really helpful as I needed strategies for managing his behaviour which was becoming increasingly more difficult. I told the Psychiatrist that the school were pressuring me for a diagnosis. My son didn’t sleep, I was really sleep deprived and was struggling to cope with his behaviour.

Further involvement and diagnosis

At this stage the Psychiatrist co-ordinated the other professionals, which I really appreciated, and my son was given a diagnosis of Asperger’s (on the autistic spectrum) and ADHD (Attention Deficit and Hyperactivity Disorder). The diagnosis meant that we were able to get him a statement which is what the school wanted. The Paediatrician discussed with me the option of medication, but I was really against it as my son was only 4 at the time. Between the age of 4 and 7 I carried on seeing the Psychiatrist for support with his behaviour, but not as regularly. However, by the time he was 7 I decided to agree to medication as his schooling was really suffering and he was struggling. It did help, but we had to make sure he was on the right one for him, the dose etc, and it supressed his appetite, so we had to monitor his weight. By the time he was about 8 things had got really bad at school, his behaviour was becoming more extreme and social services became involved. At first I was really sceptical, but we have a great Social Worker from the Disabled Children’s Team. I really felt at this point that the school was not meeting the needs of my son so I fought to get him into a special school.

What happened next?

Once he was attending the special school the change in my son was dramatic. They seemed to understand him so much better, things like his fidgeting and sensitivity to lights. Also, he had access to Occupational Therapy and Speech and Language Therapy which were written into his statement. At CAMHS we worked with a Psychiatrist who was amazing, he was able to explain my son’s condition to him in a way I couldn’t. He was really proactive and communicative, and involved both my son and myself in discussions. We are still receiving support through CAMHS although we have now moved so have only had one meeting. My son will be leaving school soon so there will be a multi- agency meeting involving myself, Education, CAMHS and Social Services to discuss his future as he will hopefully be starting college.

(Story details taken 13/3/14)

Download: Family Story - ASC Transcript