Sam and Josh's story

Autism spectrum condition

Sam and Josh are identical twins and were diagnosed with autism spectrum condition (ASC) when they were six. They have a strong need for routine, find it hard to understand other people’s feelings and viewpoint, and their behaviour can be challenging.

In many ways, the twins are just like other boys of their age, enjoying cub scouts and computer games, and they are gifted in maths and science. However, they found primary school very difficult: often upset and frustrated, they would scream, shout, lash out and throw things.

Sam and Josh were not allowed to join the other children at playtime, lunchtime or for sports – and were frequently excluded from school.

It was a time of utter desperation, Our parenting skills were openly called into question, even though we’d raised three other children.

Cathy, the twins mum

Sophie and her mum — *Sam, Josh and their parents*

Eventually, an educational psychologist diagnosed both boys with autism spectrum condition and developmental coordination disorder, which affects balance and co-ordination. Sam and Josh now attend a small, independent school for children with special educational needs where, with expert staff managing their behaviour positively, they are thriving. But they will always need support to help them cope with adult life and stay safe.

When you have children with autism spectrum condition you can’t assume anything about family life. You simply have to tear up the rule book and start again,”

Cathy, the boys mum

Action is funding a study using specialised scans to measure key chemicals in newborn babies’ brains – to understand their role in shaping early neurodevelopment and look for changes in children who develop problems including autism spectrum condition.