In December the Guardian website published this article about the rising number of mothers who – after having a child diagnosed with ASD – have realised they, too, are autistic and want to pursue a diagnosis.
I am not some sort of anomaly. I’m not unique in being in this situation where I have realised as an adult that I’m on the autistic spectrum. This is a common experience for parents (and especially mothers) of autistic children. I’m not the only mum out there trying to weigh up the pros and cons of seeking an assessment to see if I can get an official diagnosis.
When I first realised (or, rather, when my family first told me) I’m autistic, a diagnosis seemed a bit pointless. In all honesty, it seemed like the height of naval-gazing. I’d got through nearly 30 years (now a little over 30 years) without a diagnosis so, really, what would it achieve?
It’s a question I’ve spent many hours pondering. Eventually I came to the conclusion it is worthwhile pursuing an autism diagnosis as an adult.
Right now I don’t work. Well, actually Wolf and many fellow feminists would be frustrated with me saying that. Rather, I don’t do any paid work. Being a stay at home parent to two young (not to mention autistic) children is work but I don’t have a boss to report to (unless you count the small tyrants who demand an endless supply of milk, Cheerios, toys and YouTube videos and who pay me in hugs and scribbly drawings).
However, one day I might return to the world of paid work and at that point a diagnosis would be a useful tool. My employer would legally be required to make ‘reasonable adjustments’ to help me cope. What form those adjustments might take could vary massively depending on the job and my own needs but could be things like allowing me to listen to music at my desk through headphones to drown out any other noise I might struggle with, communicating with colleagues more through email and less in person, allowing me to wear more comfortable clothing if I had sensory problems with a uniform, letting me use a fidget toy, giving me more explicit instructions than other workers so I don’t feel unsure and anxious.
Having reasonable adjustments in place can mean many people on the spectrum can manage to hold down a job when they otherwise simply couldn’t.
The are reasons for an adult diagnosis aside from employment, though. As the article I linked to points out, many parents of autistic children run into problems with social workers because their own undiagnosed and unrecognised autism makes it hard for them to communicate with said social workers. As a family, we don’t have any social worker involvement, but even communicating with teachers and doctors and health visitors can be tricky with autism. Being able to explain those communication problems with the back up of a diagnosis can help or – in a worst case scenario – protect autistic parents.
In fact, dealing with all manner of people can be easier when you have an explanation from medical professionals for why you’re struggling. You can, for instance, request a chaperone for hospital appointments when you might not be in the best position to communicate with doctors about what’s wrong or in the right frame of mind to take in anything they’re saying (bright strip lights, overpowering smells, lots of people…hospitals are not nice places for most people on the spectrum).
Keeping with the medicinal theme, many autistic people react to various treatments and drugs differently to their neurotypical counterparts. From pain medication to therapy, autistic bodies and brains are just not wired up the same as everyone else and knowing why someone might not be responding as expected to any given treatment can be hugely helpful in finding one that will work.
And what about old age?
If I end up in a care home when I’m older, I’d like the staff to know I’m autistic. It could be pretty important in terms of how my care is handled. Plus, the process for being diagnosed with dementia or Alzheimer’s relies heavily on asking the individual various questions. If that person already has communication difficulties and might – at the best of times – answer differently to most people it could very much affect the results of any assessment for these (and other) conditions.
There are lots of issues regarding aging and autism that need a lot more research and many of these are specific to women and, for instance, going through the menopause (Cos Michael is one of the few people talking about these issues and this video is a good starting place if you’re interested in finding out more). Hopefully, these issues will be researched soon, at which point having a diagnosis would be very useful later in life.
The last reason for pursuing an assessment is less to do with practicalities and more to do with personal peace of mind. After years of not quite fitting in, of always feeling like an outsider, of always feeling like you struggle that bit more than everyone else just to get through each day, of assuming you must be weird or lazy or simply a bad person…the relief of having a professional say it’s not your fault and there is a medically recognised reason can – I hear – be immense.
So, all in all, I would like an assessment. I want a diagnosis.
Of course, that’s easier said than done considering when I mentioned the fact I was pretty sure I was autistic and wanted an assessment to my GP she looked at me like I had just said I seemed to have grown an extra nose on my foot and wanted her to find me a good witch doctor to treat it.
…That’s an issue for another post, though!