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.
The assumption that we must have worked it out by now if we’re still walking, talking and have a pulse can hide a grim reality of difficult, isolated and unfulfilled lives. Over time I’ve learned the hard way how to present well in public but behind closed doors it’s a different matter. I live in a house where the lights, fridge, cooker and washing machine have packed up one by one but I lack the skills to sort it out, and I’d rather live in darkness than have someone I don’t know in my personal space. I may be a graduate with a high IQ but I struggle financially due to a lifetime of subsisting on a single, small part-time income. I lack close family or friends to support me and on the many days I spend alone I am liable to forget how to talk. Sometimes someone just giving me a reality check of the “have you eaten today?” kind would be useful.
Support might be useful for other reasons too. Late diagnosis may eventually bring closure and reconciliation, but not before a weeping and gnashing of teeth for which nothing prepares you. For nearly a year after diagnosis I wept and gnashed in equal measure, mainly fuelled by regret for what felt like a train wreck of a life. Here I was, all these years on, finding out why but still no one to point the way, welcome me into the club or tell me where to hang my coat. This autism business sucked.
Left to my own devices, I turned to the internet, where I discovered there were others out there trying to make sense of it all too – an online tribe for the tribeless, a diaspora of aliens in a neurotypical universe. For some, online communication is a lifeline. For others, like me, it was the only available option and, as someone not born in the digital age, not necessarily the preferred one.
But the internet was all I had and it has served me well. Slowly, that which had always been baffling and frustrating began to make some kind of sense. These days I understand my quirky behaviour, that not everyone prizes truth over tact and why my best friends have always had four legs. Over time I’ve come to accept autism for what it is: a lifelong neurological difference that comes with gifts and limitations. In the long-term, diagnosis has allowed me more self-forgiveness and self-understanding and I’m much happier because of it.
But some support in reaching that place would have been useful. So would occasionally being asked: “Do you need any help?”
Susan Dunne is the author of A Pony in the Bedroom, a memoir of life with undiagnosed autism. She is a postgraduate student in aspergers and autism at Sheffield Hallam University and a regular columnist for Autism Daily Newscast.
