Navigating the Challenges of Parenting an Autistic Child

My youngest son has always been a character. Diagnosed with Dyspraxia at just 5 years old, we knew early on that he would face certain challenges. His difficulties with articulating speech, poor balance, coordination, and spatial awareness made everyday tasks a little harder for him. But it wasn’t until we relocated just before the pandemic lockdown in February 2020 that his teacher and Special Educational Needs Coordinator (SENCo) suggested we assess him for ADHD or autism. That meeting was eye-opening.

Suddenly, everything started to make sense—the emotional outbursts, the struggles with following instructions, and the inability to pick up on social cues. His meltdowns, which sometimes felt as explosive as a volcanic eruption, weren’t just moments of frustration. They were his way of coping with sensory and processing overload, often triggered by incidents at school or transitions between activities.

The SENCo referred him to the neurodevelopmental team at Tees Esk and Wear Valley NHS Foundation Trust. After months of waiting, our referral was rejected. They wanted to rule out factors such as diet, behaviour, or trauma in the home. What complicated things further was that my son seemed to "behave" when at his father’s house, and his challenging behaviours escalated when he was with me. As a single parent, this was crushing. I felt like I was failing him.

We were referred to children’s social services for early years help, and though the thought was mortifying, our social worker, Helen, was a blessing. She immediately saw that my son came from a loving home and clearly had underlying challenges. Over six weeks, we worked together to implement tools like sensory boxes, visual cues, and fidget toys. While his behaviour improved slightly, it was evident that deeper issues remained.

Helen re-referred us to the neurodevelopmental team, and after 18 months, our persistence paid off. My son was finally placed on a waiting list for a neurodevelopmental assessment, but the wait time was staggering—up to three years. In the meantime, we did everything we could, working with emotional resilience nurses, school programs, and occupational therapy, but as time passed, my son’s struggles only intensified. He began to be bullied, even requiring two hospital visits after being injured by other children at school. Watching him go through this was heart-breaking, a painful reminder of my own childhood experiences.

Despite the system's challenges, there were bright spots. One of them was Dr. Patrickson from Moorlands Surgery, who recommended exploring the NHS Right to Choose program. After months of research and contacting providers, we found one with a six-month waiting period—PSICON. Their process required traveling to Canterbury for an in-person assessment, but I didn’t hesitate. The drive was a small price to pay for answers.

PSICON has been nothing short of amazing. From the very beginning, they kept us informed and made the process as smooth as possible. My son, his father, and I completed extensive questionnaires, and within three months, he had his first autism assessment with two occupational therapists. Recently, we attended a second assessment with Dr. Ani, who confirmed that my son would receive a recommendation for an autism spectrum disorder diagnosis. After four years of waiting, we finally had the answers we so desperately sought.

Throughout this journey, I often worried that my son’s behaviours were a reflection of my own struggles as a neurodivergent single parent. However, Dr. Ani explained that this is not the case. She shared something that truly surprised me: one of the reasons my son responds better to his father during autistic meltdowns isn’t due to the techniques I use, but because of the difference in our voices. According to a study by Daniel Abrams at Stanford Medicine, children with autism often struggle to recognize vocal cues that signal emotions. Dr. Ani explained that my son finds his father’s lower-pitched, expressionless tone calming, compared to my higher-pitched voice and more animated gestures.

As I left that meeting, I was overwhelmed with relief. After years of battling the system, we finally had the validation and direction we needed to support my son in reaching his potential. This journey has been incredibly long and emotionally exhausting, but it has also deepened the bond between me and my son. Together, we’ve navigated this path and will continue to face whatever challenges come our way.

For any parent going through a similar journey, know that while it may feel isolating and never-ending, there is hope. Keep advocating for your child, and eventually, you’ll find the answers and support you both need.