The learning curve of diagnosis The day Luke was diagnosed with autism was far less difficult than many of the meetings and appointments we had leading up to it. The verdict was inevitable, so my husband and I were oddly cheerful as we went to hear it. I tell people that it was virtually a date for us, as we so rarely get to go out without the boys. But in reality, by that point the ‘watchful waiting’, the limbo and the unhelpful suggestion from friends and family that we were just imagining our son’s additional needs had all become a colossal strain. We were ready to graduate to having a name for it all. The assessment process was initiated by a health visitor who was there to see Luke’s new baby brother. She was concerned about Luke’s lack of any reaction to the baby, coupled with his complete lack of speech at the age of two. At the time I felt irritated by the invasion — I had a baby and a toddler to cope with — but in retrospect I admire her for not leaving it up to the next professional to broach the subject with us and put the wheels in motion. And even at that early stage I knew that things were not on track with Luke’s development. The next few months were a blizzard of doctors, therapists, observations and reports. It was all an incredibly steep learning curve. For me the only barrier to accepting the pathway we were now on was a very simple one. Luke attended a toddler group and I knew several other boys who were also very late in talking. Nobody was concerned about them, so part of me thought why should Luke be so different? Then, one by one, those boys began to come out with their first words. It was when the last of them starting talking that I knew I was ready to embrace Luke’s special needs. One door had closed, another had opened. The professional and charitable support we received was fantastic; the personal support far less so. My husband and I took a dark enjoyment out of cataloguing the most inappropriate and thoughtless responses friends and family gave when we told them. This gave us an early taste of the strength we would need to advocate for our son — and for ourselves, which even now we both find the harder of the two. When I see the cuts being made to services, statutory assessment, therapies and support at every level, and the fights families can have on their hands to get a diagnosis of autism, I feel we were genuinely lucky with Luke’s journey to diagnosis. Even just five years later I believe it would now be a more drawn-out process, with more people to convince and far less support at the end of it all. But diagnosis gave us more than words on a piece of paper, or legal rights: it gave us an identity as parent/carers, it opened doors and it meant we belonged — somewhere, somehow, to something other than a waiting room. I wish that at the time of Luke’s diagnosis someone had told me that, as his parents, we, alongside his younger brother, would have the biggest impact on his outcomes. Yes there were leaflets to read, professionals to learn from, therapies to research. Yes there were (and always will be) battles to be had to ensure that other people are doing what they should be doing to meet his needs and that he is not missing out on something he is entitled to. But nobody else will be as involved in Luke’s life as consistently as his family. Nobody else can possibly know him as well as we do: the tiny triggers, the motivators, the wonderful, peculiar, Luke-like skills that autism gives him. Ultimately, nobody else can provide the love, stability and family life that we can. Katherine is the mum of two boys, eight-year-old Luke, who has autism and is awaiting a diagnosis for ADHD, and Jacob who is six. She lives with her husband in south London.