I was diagnosed with an autism spectrum disorder in my 40s. Like many adults who’ve slipped through the diagnostic net due to being high-functioning, born too early, or simply female, I’ve spent a lifetime trying to figure out the lifelong social and sensory difficulties of autism. That none of us wake up cured at 18 still appears to mystify some professionals. That we might still benefit from some support, however late the diagnosis, does too.
Many of us have garnered a few other labels along the way: freak, geek and weirdo from the bullying fraternity; personality disorder, depressive and awkward sod from the mental health fraternity. Psychiatry had a different take on it: in autism I had a neurological learning difference which did not render me mad, bad or dangerous to know – always good to hear – and nor was I intellectually challenged. I was told I was “too high-functioning” to benefit from any autism services (not that there were any in the vicinity anyway) and that I must have worked it out by now. I was discharged with a letter wishing me well and a website address for the National Autistic Society (NAS).
In other words, it was a case of “work it out on your own”. Nothing new there: I’m not alone in receiving a late diagnosis where post-diagnostic support is little more than a website address. Statutory guidance for the Autism Act 2009 recommends that health and care should work together to ensure those diagnosed are signposted to a social care needs assessment. The NAS describes progress on its implementation as “patchy and subject to regional variation”. In reality, this often means the assessment is inappropriate, inadequate or, as in my case, non-existent.