Damian: A father's story

Damian Milton and his sonI’m 37 and live in Kent. I was diagnosed with autism in November 2009.

As a child I often felt misunderstood, particularly by my peers and at school. I remember being bullied on my first day at school and regularly, until I was in my second year of sixth form. Me being me, I responded quite belligerently.

Differences between me and my brother

My older brother was talkative and outgoing and I was laid back and passive. Most people thought I wasn’t listening but I was absorbing it all. People often patronised me, as if I wasn’t there. I’m very good at absorbing information but not at expressing it.

It didn’t occur to my parents I had autism, as little was known of it at the time, and they treated me as an individual. Just before I went to secondary school my brother, mum and I were in a car accident and my mum became physically disabled. I went into post-traumatic shock and combined with the undiagnosed Asperger’s the situation spiralled downwards. I saw psychiatrists and they said I’d suffered a trauma from the accident and was suffering from a personality disorder. Another psychiatrist decided it was catatonic schizophrenia.

Getting my diagnosis

I only got my autism diagnosis because of my son. When he was 18 months old his mum was concerned he wasn’t responding to her. At first my reaction was, “There’s nothing to worry about, he’s just like me!” He was diagnosed with autism aged two and it was while I was reading autobiographical accounts of people with Asperger’s that I thought, “I did that as a kid.”

My GP said there was little she could do for me as I didn’t have an IQ below 70 – I’d started my part-time PhD by then. I wasn’t happy with that so I went to the Kent Autistic Trust and had an informal assessment and a different GP referred me to the Maudsley. Nine months later I went to the appointment with my mum and the doctor diagnosed me with Asperger’s. I expected it. It made sense and confirmed what I already thought. My mum was philosophical about it and my brother and dad found it difficult at first. Now they are supportive. My ex partner, the mother of my son, saw it as positive as now I have self-understanding.

Being diagnosed has given me more strength in terms of the work I do as a sociologist about presenting my ideas about autism.

My son at school

My son is eight now and at a primary special school. He struggles with a lot of sensory stuff, as I do, and finds the school environment hard. He stays with me during the week and his mum at weekends. He is classed as non-verbal, but his mum and I understand him better than anyone. He is the most important person in my life and has given me a purpose; it’s the best relationship I’ve ever had and I can feel his love even if he can’t talk about his feelings. His nan, my mum, says we’re like ‘two peas in a pod’.

I’ve been a Community Champion on Talk about Autism, an online community, since June 2010 and like being able to discuss issues with the other champions and other members of the community. It’s good to be involved and have positive effects for other people.

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