Ellen Jones’s latest video deals with her autism diagnosis, her mental health, and her thoughts on the services available to autistic girls – and it’s hugely informative.
During World Autism Awareness Week 2018 (26 March to 2 April), Ellen Jones put out a video answering questions and talking about her experiences with being autistic, and with only being formally diagnosed in her late teens.
“I was actually surprised how short the time was that I had to wait [for a diagnosis],” Ellen begins. “But I think that was because I had a team that was incredibly on it and that was quite well resourced – and not everybody has that opportunity.”
She continues by saying that “it was only when I was already engaged with the mental health services that they went, ‘Oh, there’s something going on here beyond just your mental illness and mental health… We think you might have a neurodivergency’.”
Ellen’s experience isn’t unusual among autistic people. It’s all too common that autistic people are drawn into the healthcare system for other conditions that end up either overlapping with their autism or highlighting symptoms that they may have thought were part of their other condition(s), simply because they lacked the resources to explore that before.
One issue that is raised regularly among autistic people and allies is how to define them, which is often phrased as a choice between two terms, “autistic person” or “person with autism”, with Ellen expressing her preference for the former. “I don’t have autism, I am autistic – autism is a fundamental part of the way that I perceive the world, I interact with it. It kind of colours the way that I view things.
“I think for this, personally, it’s easier to explain it from the perspective of what autism is,” she says. “So, autism is a developmental condition, it’s a neurodivergency which affects how your brain is, effectively. It affects communication, it affects senses, emotions, those kinds of things, and it’s a condition that you’ve always had – you can’t cure it. There are no cures for autism, and it’s not something that can be caused.”
When she’s asked about her experience with sensory overload, Ellen talks about how bars and clubs are triggering for her. “I’m more affected by there being lots of loud, flashy lights,” she says. “When it’s socially acceptable to put on giant headphones, as it often is in London – for example, on the Tube – and not engage with anyone, that’s just kind of how I process.
“I’m coming at it from the perspective of someone who didn’t know they were autistic for a number of years, and thus just learned to manage these things,” she adds. She points out that this also raises a problem with diagnosing autistic girls (though she mentions that non-binary people and trans women also experience similar things, because of the othering they face in the healthcare system): it’s because they learn to manage that some go undiagnosed far into their adulthood.
She goes on to answer questions about her complaints regarding the healthcare system’s approach to autistic people, especially in terms of diagnosing and treating autistic people for other conditions and mental health issues, mentioning her own bipolar disorder and how she feels left out in the cold, scrabbling together whatever coping mechanisms she can.
This video, like so many Ellen puts out, is brilliant in every way. It’s informative, eloquent, and easily accessible. Ellen goes into great detail on each question she’s asked and, even if you’re already well versed on autistic issues, you might find yourself coming away from the video with new knowledge or a better understanding of the topic. Ellen is doing great work with the platform she has, and we at TenEighty find ourselves constantly amazed by the quality and consistency of her videos!