I don’t know how you spent your childhood, but I whiled away my time pretending I had special powers. My parents tell me that I would often try and overcome conflict by casting magic spells or pretending I was invisible (give me a break, I was only nineteen). As I got older, I began to realise that abracadabra wasn’t doing it for me, and turned my attention to dismantling electronics instead. In my quest to understand how things worked I forgot all about magic spells and special powers—I’ve never even read Harry Potter—but, when it came to writing this post, I realised something that would make the younger me explode with exultation: I actually do have a special power.
Well, sort of… Part of me is invisible.
The technical term is Autism Spectrum Disorder (ASD) and you can’t usually see it. It’s so invisible, in fact, that some people I’ve known my whole life weren’t aware of it until I posted a coming out status to Facebook. So invisible that I often forget it’s there myself—until something happens to remind me, that is. And it’s usually as painful as stepping on a plug you forgot was there, in the middle of the night.
ASD is the name given to a collection of developmental disorders which affect communication, social interaction, interests and behaviours. It’s classified as a disability but I don’t view myself as being disabled. Disability doesn’t seem like the right word to me. And neither does disorder. The best that I can come up with is to say that I have a diagnosis of Autism Spectrum Disorder. But I definitely suffer some of the consequences of being on the spectrum.
Autistic Burnout is probably the biggest problem I face. I am tired. All of the time. If you ever have occasion to attend the UofG Myers Briggs Workshop you should go along: I won’t spoil it for you now, but there’s a really nice handwriting analogy that describes Autistic Burnout perfectly. I also have a strong need for consistency in everything that I do: from the rigid meal plan I follow, to the fact that I have multiple sets of the same clothes. I need things to be organised and tidy: colouring outside of the lines isn’t something I’m good at. These might seem like minor issues but not being able to do these things is actually harmful to my mental health. I often suffer from episodes of anxiety.
How does the disability service help?
It took me a while to register with the UofG disability Services but, once I did, I was able to access useful support. Although it can be daunting to take that initial step, it’s definitely worthwhile.
Thanks to the disability service:
- I was able to access extra funds which pay for a National Autistic Society mentor.
- My student profile contains a record of how ASD affects me. I am able to share this record with whoever I want. So far, that’s my supervisor.
- My supervisor is officially aware of my diagnosis, which helps to manage expectations in our relationship.
- There are provisions in place for situations that might cause me difficulties (such as acknowledging that I’ll probably need time off to recover from conferences and other communication-intensive events).
- I was given access to the Disabled Student’s Network: a moodle forum where I can access peer support from students in similar situations as me.
These are just some of the ways in which being registered with the Disability Service has been useful. I haven’t yet mentioned the peace of mind that comes from knowing that the University is aware of any possible issues before they arise. In short, I’m happier than I was before.
I’m not suggesting that everyone is going to have a similar experience, but my interaction with the UofG Disability Service has been an entirely positive one. Although I was initially unsure about contacting them, I’m glad that I did: it has definitely enriched my experience as a PGR. If you are wondering whether it might help you then I would urge you to contact them and set up an initial meeting. Even if you decide not to pursue any follow up support, just talking about your condition with a trained professional can be a useful experience. If you would like to find out more about the services they offer, check out this information leaflet or their webpage.
Some Facts about Autism Spectrum Disorder (ASD)
- Officially, the prevalence of ASD in the UK is approximately 1%. That means that for every one of me there are 99 of you.
- In Scotland, the prevalence is actually lower, at 0.6%. Now you outnumber me 167 to one!
- ASD is more commonly diagnosed in males than in females, with a ratio of four to one.
- ASD doesn’t just affect children: autistic children grow up to become autistic adults, just like me.
- Only 16% of adults on the spectrum are in full-time employment.
- Only 32% of adults on the spectrum are in any kind of employment.
- ASD isn’t a mental health issue but people with ASD are more likely to suffer from mental health issues than those without.
- The process of diagnosis I went through is called the DISCO. Seriously. It stands for Diagnostic Interview for Social and Communication Disorders… but there wasn’t any music.
- Sunday was World Autism Awareness Day so grab your party hats and join in the celebrations.
You’ll notice that I phrased the third point as ‘more commonly diagnosed’ instead of ‘more common’. That’s because there is no clear evidence to suggest that ASD prefers any gender. It’s more likely that the diagnostic process is skewed towards males and, when you think about that, you’ll probably agree that the prevalence is likely higher than the official numbers suggest.
If you want to know more about people with Autism Spectrum Disorder then I highly recommend checking out the #actuallyAutistic hashtag on Twitter where you can read about the every day experiences of people with ASD.