A guest post by Ellen Jones
Imagine being told that you had been living with a disability all of your life, but you never knew, or even suspected it. This disability had coloured your every interaction with the world, from the way you perceive light and sound, to your ability to communicate with others.
That was my position nine months ago. Aged eighteen years old I learned that – not only did I have a mood disorder, Bipolar Type II – but also that I was autistic.
Autism is a developmental disability existing on a spectrum. It is experienced differently by each person, but broadly affects our behaviour, social interactions, communication and the way we receive sensory input. It is important to know that autism is not something which can be cured or treated, it cannot be caused by vaccinations (and even if it were, that wouldn’t be a problem as there is nothing wrong with being autistic) but is in fact to do with the way the brain develops, hence the condition is from birth.
Autism was thought to effect 1 in 100 people, although experts now believe that it may be significantly more common. Increasingly, it is being recognised how underdiagnosed autism is amongst women and other marginalised groups, such as in the LGBTQ+ or BAME communities.
There are two primary reasons for under-diagnoses: firstly, the diagnostic tools are geared towards autistic young white boys, so much so that it is now recommended that autism assessments be adapted for women and girls as it is recognised that they may not fit the typical profile. Additionally, certain groups of people may ‘mask’ or camouflage their symptoms, for example social difficulties may be less visibly pronounced in girls who often teach themselves how to socialise.
In hindsight, I was so incredibly fortunate that I was ever diagnosed at all. After all, I never actively sought a diagnosis – something which many people spend years fighting for. It was only happenstance that one very perceptive doctor asked all the right questions and picked up on small things about my life I never knew even were autistic traits.
I never realised my lifelong inability to socialise, to not understand facial expressions (I did not even realise that was something other people could do!), my propensity to become overwhelmed in loud or bright environments, repeating what others said back to them, repetitive calming gestures, obsessive special interests and the hysterical meltdowns I had when plans changed, were all clear signs I was autistic. I now realise that many of my eccentricities – for want of a better word – and the things I found difficult growing up, were not personal failings but a symptom of my condition. My diagnosis was a step toward me berating myself less for things I could not change.
Whilst autism itself is not a mental illness, autistic people are significantly more likely to experience comorbid mental illnesses than the general populace, in particular Anxiety, Depression and Obsessive-Compulsive Disorder. A combination of biological differences in the structure of autistic people’s brains, communication issues creating isolation, social difficulties and low self-esteem are often attributed to being contributing factors in the poor mental health of autistic people. Frustratingly however, there are very few mental health services providing specialist support for autistic folks in the UK and thus many of us struggle to access appropriate levels of support.
Personally, I am yet to find a mental health team who knows what to do with me, frankly. I have Bipolar Disorder and I am autistic, and treating the former means having significant understanding of the latter and how it affects me.
As a result, I have two diagnoses and almost no support. But for many, I know they will go without any diagnoses or any support and that simply is not good enough. We need to ensure all autistic folks have access to a formal diagnosis should they want it and appropriate & accessible services which understand our needs whether they be physical or mental.
- Don’t be afraid to tell people you are autistic. I do not ever like to use my autism as an excuse per se, but it is helpful for me to have my friends know that I am autistic as sometimes a situation might arise where I make a social faux pas or need to leave a loud environment (as a student, that would be a night out) and it is reassuring for me to know they do not think I am mean or bailing.
- There are lots of online support groups for autistic people. If you have a question, no matter how niche or weird, I can guarantee someone else in those groups has asked that before.
- Find tools specifically designed for autistic people looking to improve their mental health. There are also resources for clinical practitioners and providers which can be very helpful to share if your team is not so clued up on autism and I have found them invaluable.