When my son Thomas was diagnosed with autism at age three, I naively thought his nursery and local school would ensure he got the support he needed. Instead, what followed was a decade-long battle navigating the complexities of the UK’s special education system. Thomas hit every milestone on time - walking, talking, reading. But around age two, he began to withdraw into his own world. Loud noises distressed him. He echoed phrases endlessly. His tantrums were explosive. I knew something wasn’t right.
After months awaiting an assessment, we finally got Thomas’s diagnosis. Every parent’s worst fears, made real. But I told myself: he’ll get help now. Services will kick into place. We’ll get through this. Yet the interventions I expected never came. Thomas’s nursery were sympathetic, but ill-equipped for his needs. They immersed Thomas in chaotic rooms that overwhelmed his senses. When he lashed out, they excluded him. When he didn’t speak, they left him alone. I began getting calls to collect him every afternoon as staff insisted they couldn’t manage his behaviour. Still, I hoped primary school would be better.
Thomas’s school years started positively. With his statement of special educational needs in place, he received some 1:1 support. A teaching assistant worked with him daily on social skills and coping strategies. He struggled academically, but seemed happy. But by Year 2, problems surfaced. Thomas required significant routines and struggled to transition between lessons, often having meltdowns when asked to switch tasks or classrooms. The noisy, crowded environment left him in sensory overdrive. When overwhelmed, he would shout, cry, or hide under tables. The school insisted this disrupted other children’s learning.
From then on, it was endless meetings and disappointments. The staff maintained they were ill-equipped for Thomas’s level of need. They pressured me to look at special schools. But Thomas had made friends; I wanted him included. We became trapped in a cycle of incidents, exclusions and unsuccessful interventions. By Year 5, Thomas was excluded almost weekly. The school blamed his behaviour, though they’d long since stopped using recommended strategies. When he slammed a door in frustration, they’d send him home. When he had a meltdown, they’d isolate him. No allowances were made for his neurotype.
When a seat finally became available at a specialist autism unit, I was relieved. Thomas could get the support so lacking in mainstream. But I still felt guilty, like I’d failed him. Inclusion should have worked. In the unit, Thomas has thrived. Smaller classes, sensory rooms, specialist communication techniques - all tailor-made for his needs. He’s gained confidence and skills. For the first time since those nursery days, he is excited to learn. I wish he could have had this quality provision from the start.
Our journey has shown me how sorely mainstream schools lack autism training and resources. Despite well-meaning staff, they follow a neurotypical model ill-suited to different wiring. They react with punishment, not support, to autistic behaviours. For parents, it becomes an endless fight just to keep your child included, let alone educated. The statementing process is equally fraught. Assessments focus on academic skills, ignoring sensory, communication and developmental needs key for autistic students. You have to battle to get appropriate provisions written into plans. When schools inevitably try to pare back support, your statement becomes a sticking point for endless disputes.
Teacher-student ratios, overstretched budgets and exam-focused curriculums also undermine inclusion. Schools insist they cannot provide adequate 1:1 support, sensory breaks, or modified lessons. Kids who don’t “fit” get left behind. Navigating these systems alone is challenging enough. For parents lacking confidence, language skills or formal education, it must be practically impossible. Your child’s rights shouldn’t depend on your ability to fight for them.
My son deserved better than being treated like an inconvenience until he finally got the specialist intervention he needed all along. Building an education system that works for all students, not just the neurotypical, will require investment and a culture shift. But our children’s education - and futures - are worth fighting for. Though Thomas still has challenges, I’m proud of who he is becoming. He’s come so far from that anxious, overwhelmed boy unable to cope in his primary school classroom. Perhaps one day, with the right understanding and support, students like Thomas will be the norm, not the exception. Until then, I’ll keep advocating for that inclusive ideal.
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