A Fountain of Laughter - Our Son Ben

Life is full of surprises—like a box of chocolates, as the saying goes—and having a child with autism and a learning disability was certainly an unexpected journey. In 2008, my wife, Alison, and I, already blessed with a wonderful daughter, decided to expand our family. In May 2009, our son, Ben, was born. Almost immediately, thanks to the swift and insightful care of the doctors and nurses at Southampton General Hospital, we discovered that Ben had been born with a congenital heart defect. He needed a life-saving operation within two weeks of his birth.

 

Ben’s heart condition and the operations he underwent shaped much of his life, but his unique way of experiencing the world, his struggles with communication, and the challenges he faced were equally defining. Even as a baby, his behaviour was markedly different from his sister’s. He showed little interest in eye contact, rarely looking into our faces even when we held him close. As he grew, he did not develop speech at the same pace as his sister. I remember the large number figures on their bedroom wall; while his sister quickly mastered counting to ten, Ben would manage only a few numbers before trailing off, disinterested. Our house was always filled with conversation, but none of it ever came from Ben.

 

At first, we thought he was simply taking his time. But as the months passed, it became harder to ignore the differences. Unlike other toddlers, Ben seemed indifferent to interactive play; if I rolled a ball to him, he rarely showed interest, let alone rolled it back. Yet, despite everything, he was a happy and playful child, and we were so grateful that the hospital had given him the chance to thrive that we pushed aside our concerns about his development, focusing instead on the joy he brought into our lives.

 

As time passed, we realised we needed to seek answers. His pre-school teacher referred him to a consultant, and the diagnosis came swiftly—Ben was autistic. At the time, autism was just a word to me, one I had little understanding of. But with the diagnosis came a wealth of support. He received one-to-one assistance at school, and though his speech was initially limited, it gradually improved. One of the longest phrases he ever spoke was at school when he curiously asked a girl in his class, “What is that in ear?” after spotting her earring. At home, one of his favourite toys was a talking Dalek, which would declare phrases like “Exterminate!” and “Conquer and destroy!” Pressing that button again and again, he delighted in mimicking those words—one of his first ways of practising longer speech.

 

In addition to autism, Ben was diagnosed with a learning disability. After starting in a mainstream infant school, he transitioned to schools tailored for children needing extra support. He flourished there, engaging in a variety of activities that brought him joy and confidence.

 

Ben was a happy, mischievous boy with a laugh that was utterly infectious. If something amused him, like his cousin flipping on a trampoline, he would almost double up laughing, clutching his stomach, his whole face beaming with uncontainable joy.

There is a stereotype that autistic individuals possess extraordinary abilities. While Ben did not exhibit any such ‘superpower,’ he had an incredible capacity for pure, euphoric happiness. I often wondered if his limited grasp of abstract concepts freed him from many of the worries and inhibitions that weigh others down. He did not understand the days of the week or the name of his own country, but he understood joy, and when he was happy, he radiated it like a shining star, a true fountain of laughter.

 

One of his favourite pastimes was meticulously arranging his toys on the floor, particularly his toy animals and cars. We bought him large collections of these, and he would spend hours placing them in precise patterns, sometimes right in front of the door—much to our inconvenience. This habit was a source of deep relaxation for him, a behaviour often seen in autistic children.

 

Ben’s lack of self-consciousness also meant that when he wanted to express love, he did so with an unrestrained purity. During his twelfth year, he developed a nightly ritual of waiting by the door for me to return home from the office. No matter how tired I was, seeing his face light up with joy as he greeted me was often the highlight of my day. He never grew weary of the elaborate greeting routine we devised together. At his age, I certainly wouldn’t have done the same for my own father; by then, I was too busy being “too cool for school.” But Ben had no such inhibitions, and I was deeply proud of his ability to express love so freely.

 

Of course, his lack of restraint extended to all emotions, not just joy. When frustration or anger overtook him, it could be just as consuming. He had periods of fiery rage that were a real challenge for us to manage. Another aspect of his behaviour was his tendency to repeat the same words or phrases endlessly—days, even weeks, of repetition that could wear us down.

 

As he grew older, he became increasingly intolerant of visitors or even of us simply having conversations at home. Some of this may have been due to the lockdown, when he became used to us having no visitors. Opening up the house again could have been an upsetting shock for him. His protests were loud and persistent, and while enduring them for a short time was manageable, experiencing them month after month could feel suffocating. There were moments of such overwhelming exhaustion and bleak despair that I scarcely recognised myself. Parenting Ben meant navigating an emotional landscape more intense than anything I had ever known.

 

Despite the challenges, raising Ben was an experience of profound love and joy. Even the hardest moments had their place, making the joyful ones shine even brighter.

 

Tragically, in early 2022, Ben passed away at the age of twelve due to complications from his heart condition. Our family remains forever grateful to the NHS and the extraordinary care they provided at every stage of his life.

 

In writing this, my hope is to offer a glimpse into the world of raising a neurodiverse child with autism—the struggles, the laughter, the love. Of course, we miss Ben every single day. But we never saw him as “different.” He was just Ben, and that was what made him so special.