The family were all seated on the train we take every Sunday evening. The train started. But instead of going forwards from the station it shunted backward.

William, our autistic son, jumped up from his seat jabbing his finger forwards, “Train go that way” he shrieked repeatedly. Fellow passengers stared, some with obvious sympathy, others were plainly irritated by the noise.

Predictability and sameness reign supreme in our household. 

William hates change of any sort – from what he eats for breakfast to where the cutlery is stacked. Change and uncertainty can provoke massive anxiety, which can be acted out in various obsessive ways. The departure of a much liked nanny provoked William to haul bulging bags of toys around the house for two weeks, laying them all out in a strict grid on his twin bed when he went to sleep. All were packed up and hauled downstairs in the morning. 

William, aged 19, has autism with moderate to severe learning difficulties. When he was three years old the local paediatrician declined to give him a diagnosis of autism - despite him being non-verbal and locked into rocking himself and playing obsessively with his Thomas the Tank engine trains.

“Too affectionate to be autistic" opined the doctor surveying William tucked into his dad’s lap.

As we all should know, autistic people share certain traits but they are all different. Eventually we went for a private diagnosis. Then we were shown the door.

The diagnosis provoked our search for the most effective therapies as well as a commitment to help fund much needed research into the condition. The latter sparked our relationship with Professor Simon Baron Cohen and our subsequent financial support for The Autism Centre of Excellence (ACE).

What we found in seeking evidence based therapies was a world with no agreed sign posts.

Little has changed today. Different professionals we met advocated varying interventions. We tried a few. The Picture Exchange Communication System (PECS) was a useful start. Makaton, a form of signing was also investigated. As was psychotherapy.

Education at 5 was the game changer. We met the headmaster of a local special school and we asked for assurances that William would be taught to read and write. He muttered something about that being challenging for children like William. I howled with rage and sadness when we got home. Our expectation was that William would be given every opportunity to participate in society.

We were fortunate. Friends had home educated their sons and for the past 14 years William has been the beneficiary of a home delivered behavioural programme (ABA). Speech and language therapy and occupational therapy have enhanced this. Sadly, we found that different disciplines did not always want to work together. However, we persevered and we believe the mix has been the key to unlocking William’s world.

He can make himself understood, read and write, use IT, do basic sums, sail a boat, pedal a bike, cook a simple meal, swim 100 metres and practice yoga (see picture, above). He has started to have friends. And he still likes a cuddle.

But, like the many with his severity of autism, he struggles with his limitations and the demands of daily life. Most probably he will never have a proper job or a fulfilling relationship with children of his own. He won't ever live an independent life.

I dream of the day when autism is better understood and people like William have greater opportunities to enjoy happier and healthier lives. The ACE is an important part of that challenge.

Lisa Binks, ACE Donor and mother to William