I knew my son was autistic long before anyone else would say the word out loud.
He was 18 months old. While other toddlers were beginning to play alongside one another, he lined up his cars in perfect rows. He repeated the same actions over and over. At playgroups he wasn’t shy – he was simply uninterested. Solo play wasn’t a phase; it was his world.
I raised concerns with our health visitor. I was reassured. “Let’s wait and see.”
At five, we finally started the autism assessment pathway. It was meant to be the beginning of answers. Instead, it became years of delay after delay. Appointments postponed. Referrals lost. Professionals changed. He was diagnosed at nine.
The day we received the diagnosis of Autism spectrum disorder, I felt enormous relief. I wasn’t imagining it. I wasn’t overreacting. I knew my child.
But alongside the relief came a thin envelope. Inside: a letter confirming the assessment and diagnosis, and information about a parenting course.
That was the support.
School put together a loose individual learning plan. It looked reassuring on paper. In reality, very little changed. Meanwhile at home, behaviours escalated. My little boy was growing – taller, broader, stronger. His frustration grew with him. The aggression became harder to manage and harder to understand.
We reached out for help. We were offered another parenting course.
Is that what people think? That it’s our fault?
We went anyway. We committed to it. We read, we learned, we implemented strategies with consistency and hope. But strategies don’t remove unmet needs. They don’t dissolve sensory overload or social confusion. They don’t erase the exhaustion of masking all day at school.
By secondary school, at 12, things had reached a new level. School saw an anxious boy. Polite. Quiet. Holding it together.
I saw the explosion when he walked through the front door. Like a shaken bottle of cola, fizzing under pressure all day, only to erupt in the one place he felt safe enough to let go. Doors off hinges. Screaming. Tears. Regret.
We asked about an EHCP — an Education, Health and Care Plan. We were told it would be difficult. That he was “coping”. That his anxiety didn’t appear severe in school. They didn’t see the aftermath. They didn’t live with the fallout.
Without school backing, the process felt impossible.
We turned to private therapy because Child and Adolescent Mental Health Services wasn’t available to us. He didn’t meet the threshold. Not severe enough. Not yet.
It becomes a vicious circle. Support is only available at crisis point. But every parent knows that crisis is exactly what you are trying to avoid.
You wait. You manage. You advocate. You absorb the impact at home so that school can say he’s “fine”.
An autism diagnosis can be life-changing in the best way — it brings understanding, language, and a framework. But too often, families are left to navigate what comes next alone. The letter is not the end of the journey. It’s the beginning of a much harder one: fighting for the right support before things fall apart.
And many of us are left wondering — by the time our children finally “meet the threshold”, will it already be too late?
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